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!

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:)

 
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!


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!

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....

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. 

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!

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!!!!
 
Sarah and me before church.  she wore the bow all day!!!!!! 

 
Jon and Sam at the Farm Market
 
 
Some cute pics from yesterday!

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 







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!!!

 So very thankful for his life!!!

 Sam had to ride the train 5x!  he was so happy and cute on it

The kids outside the Strong Muesum

Sam and Sarah on the light up floor.  They loved it so much!  If I were ever rich I would buy them a floor that lights up!  they spent a very happy hour playing on it!

 
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:) 

Dental surgery and Request concerning Selah

Selah's oral surgery went great. She had 6 teeth filled and 6 or 8 teeth pulled, most were baby teeth. We just want to thank Strong's Hospital and the Dentistry Department for working out all the details for us.   It was quite a job to get everything figured out and we really appreciate everything that went into getting it done for Selah.  She was originally scheduled to have this done in Florida this month but when the accident happened, that was cancelled.  It would have been overwhelming to schedule this after we go home with all that we will be dealing with.  Plus with all the problems she had with her teeth/gums she could have gotten an abscess or infection that could have affected her health.  Thank you Strong's Hospital for making things easier for us!

Once again Selah's blood pressure meds have been increased, she has a stronger patch and the BP is almost normal!  Finally!!!!!  Hope this will maintain, the last 24 hours have been the best readings she has had since the accident. 

We still don't know for sure when we will be going home, I don't think the details have all been worked out but we still think it will be next week. 

Please keep praying for Selah!  Tonight driving back and to when I was alone, I just plead with God for her.  I reminded Him how very thankful and grateful I had been for my life & how I asked NOTHING but that  He keep us healthy and all together.  I reminded Him that I didn't ask for anything else.   What came back to my mind was the word that was given to me by the German "tourist" (angel???)    at the Brandon mall...."Something BIG is coming for your family, Something is ahead of you soon and God doesn't want you to be afraid, many will see...."  I know that was a word from the Lord to me.  and that just floors me and actually makes me tremble that the God of the Universe would take the time to send me a message and it gives me courage to go on.   I wasn't promised a miracle but I was given assurance that I didn't have to be afraid.    Can you believe that God took the time to send me that message?  That blows my mind.  I am soooooo glad I wrote about it on FB and was able to go back and read what I had written so I know I didn't imagine it or was remembering it wrong!   I did laugh a little about it at the time  and thought it meant we'd adopt the other three children that we grew attached to while at the Ukraine institution our girls were at....everyone told me to go buy a lottery ticket (the lottery was really big around then)  we kinda laughed about it but I knew in my heart that the lady was not a looney toon... I sensed something when she spoke, I so wish I'd paid more attention to what she said, I have such a bad memory for details.   But maybe that was just what I was supposed to remember....God knew what was ahead, I don't have to be afraid and many will see....  I have to constantly remind myself NOT to be afraid....  In my flesh, I'm afraid of the future, scared witless, to be honest!  But my spirit is not afraid...I'm not claiming that God is going to heal her, I do not know but I KNOW He will be with us. 

The joy of serving God and walking through tough times or times when I've had to really hang on to God's hand, is that when a new trial comes, you know that God has been with you before and He will do it again!  This year 2012 has been an amazing year for our family.  We have seen and experienced God's hand like no other time in our life.  We have learned to trust deeper and more confidently.  We have seen some WILD answers to prayers and have even been blessed above what we have even asked for or thought about., during our adoption.  We had miracles in Ukraine as far as paperwork/court process/facilitator/lodgings/favor....  We had the miracle of two little girls who were older, delayed and instiutionzed come into our family with NO issues whatsoever!    We had crazy miracles of provision...    Then the accident.....and even then there were miracles with the medical students and doctors who were at a picnic nearby who ran to help and had the training that was needed.  It seemed God had everyone right in place to help Jon rescue the children.  Sam survived with no issues, his eyes didn't even get any infection from the water.  Selah survived despite what every doctor said to us in the beginning..so we have been blessed in many many ways.   Just typing this, has encouraged my heart and spirit.  We serve a good God.  How can I but trust Him???   I will not  question God foolishly...I will not turn my back on Him.  Even if He doesn't do what I want Him to do, I still am going to say I serve a faithful, good God!   I can trust Him!

In that vein....I was going to save this for later but it seems to fit nicely now.......
(I may lose some of you now....but...)

When we get home, we have some requests....If you come to visit us/Selah, do not come because you think you are the one to "pray the prayer of faith"  don't come arrogantly demanding that God does this or that because I will stop you and ask you to leave.  Respect our theological viewpoint that we trust God, we don't tell the God of the Universe what to do.   We aren't "speaking Life" or claiming anything, we are not "name it/claim it" and never have been.  We believe we try to interrupt scripture within the context of the Bible and take the whole bible in context, not just little bits and pieces.  Don't come unless you are  going to be with us for the long haul.  This is going to be a long walk and we don't need any "fly by nights" coming in and doing their christian voodoo...If you're not going to be there for the long haul, with us don't bother coming.  I don't mean to sound mean or nasty but I'm at a point where I am very focused and I don't need to have to deal with anything or be fakey polite. 

Also we have had someone come and pray for Selah who prayed that she would be healed and totally "normal", with none of the delays she had before the accident.  That REALLY bothered both of us.  She was PERFECT to us before the accident!  We chose her and Sarah and felt like we were getting beautiful little hidden jewels!  She is still perfect to us but so far away and we miss her!  The point is Selah (Sam and Sarah) were made by God and we were not and are not ashamed of their delays/mental retardation.  They are beautiful to us and we love the way God allowed them to be born.  I can't imagine any of them being any different.  In the beginning with Sam we did ask for God to heal his mind but we quit praying like that and I believe we began accepting that Sam was fearfully and wonderfully made JUST the way he is!  His DNA is so unique that I just have to believe that God made him that way.  You may not believe like we do, but do not disrespect what we believe.  We live this life, not you!  God gave him to us and allowed us to adopt these perfect girls!  They might not be perfect to you and it may bother your theology that we accept them just the way they were born mentally.  I've yet to read/hear of anyone EVER in history who was born mentally retarded (and no the word mentally retarded does NOT bother me IF it is used in the right context)  and then healed later.  Can we just accept that God creates us all differently???

Now I can pray that God heals Selah from the affects of the accident and maybe that doesn't make sense to you but if you can accept the bible says in Psalms 139 that we are all fearfully and wonderfully made  then that does two things for me.  One it lets me know that the children are fearfully & wonderfully made.  Two, we want to see her come back to where she was, where God made her.

Maybe God allows children to be born different so it will teach us all to be more accepting of others and more loving.  As a society, we are only as good as how we treat our "weakest" members  I didn't understand that until I had Sam and then found what a precious Joy he brought to us.  His life keep us tender. 

You may not understand what I'm writing but we have dealt with some CRAZIES since Sam was born and I've a bit tired of craziness!  It's only gotten worse now and I'm done with it!  Someone just cornered my husband and told him it was up to him to get Selah healed....wow...that really puts the respondisibity on my husband huh?  Good thing #1 was that I was not there.....LOLOL  #2 that our trust is in God not Jon's or anyone else ability to "get Selah healed"  

Do people not realize some of their theology is NO different than voodoo???  Really...when you think you can manipulate God (or a god) then you have more power than God.  So if you think by reciting certain scriptures or singing certain songs, praying certain prayers a certain way or whatever will make God do what you want, then your faith is no different than someone who trusts in voodoo.  There is no formula to get God to do what you want.  Is it so hard for us humans to just sit back and let God hold the reins of our lives?  Can we not trust the Creator? 

I'm not saying God delights in tragedy or causes it  but we live in a fallen world, these are the effects of sin.  Death reigns in our mortal body.  I don't think  God caused the accident nor do I believe it was "Father filtered"  (dear God deliver me from silly christian slang that makes me want to throw up)  (Father filtered means that God only lets things happen in our lives that is filtered through him, basically meaning He puts his stamp of approval on it...weird way of thinking to me!)  I believe based on scripture that things happen in life, God knows what lies ahead and in His mercy may prepare us and He will certainly walk  with us through it.  I don't believe God micro manges our lives but I believe that He does bless us in ways we don't even understand.  There is a balance there and I am trying to stay right there, in balance.  ( maybe at some point I'll discuss Arminianism  vs Calvinism which are the two main thoughts of Protestant churches.....we  are Arminianist believing in the Free will of man  and that God knows in His Foreknowledge  but He chooses to limit Himself in His dealing with man by not making man into robots that are preprogrammed)  Most of the discussion between the two camps are more in regards to the issue of salvation but for me it goes much further than that.  I'm not sure I can explain this subject clearly at almost midnight....but I'm sure I will revisit it again!!!  The reason I feel I need to share this is a forewarning to be honest...disclaimer here...if you act crazy from this point on, you will be stopped! 

So if you are still my friend....let me know:)



This evening I drove down to Mt  Morris to pick up our friends' son to spend the night with the boys.  I dropped them off at Laser Tag for them to play a couple of games.  We have some sweaty happy boys:)  Driving to Mt Morris is the furthest south I've been in 6 weeks!  It's such a beautiful area, rolling hills, fields of corn...cute little Village...

Today the weather has been odd, warm and rainy then chilly.  Right now I'm freezing again!     This is me with my comfy Pj's(thanks Loretta!) on and my nice homemade slippers (thanks future DIL!!!) and nice blanky (thanks Kelly)  I'm sitting in the cornor of the  small tv room our family has kinda taken over at the RMH:) writing my blog!  (actually this pic was taken a few days ago but I'm wearing everything again and am in the same spot LOL)



Thursday, September 20, 2012

Strong's Muesum and Update on Selah!

I took the kids to the Strong's Muesum today, as a late bday present for Shad. It's an interactive play place for kids. We had a blast:) Sam ENJOYED the train ride ( 5 times he went on it!!!) And he and Sarah LOVED the light up floor. I sat there for an hour with them while the boys played old video games. We all had a good time together Today Jon stayed with Selah. She did good, her BP is still a bit unstable and final plans haven't been made yet for transfer to Florida but we still think it will be Tuesday or Wednesday. Tomorrow they are doing her oral surgery thankGod. We had seen two dentists before the accident and she had been referred to a thrid for the surgery as she had so many teeth/gums issues. We are thrilled that she will finally get all of it taken care of here and ahve some time to recover. We appreciate Strong's Hospital for setting this up for her!! We feel it will protect her from prombems in the future. Knowing that we'll be leaving soon, I've been going through all the things we have collected in the past almsot 6 weeks! It is such a blessing to have all the cards from so many of you all. You really don't know how much everything has meant to us and you'll probably never get a thank you card although I have saved everything that had an address on it! but we do thank you for our hearts!!! I've tried 3x to post some pictures from today and it is just not happening! Blogspot has changed alot of things and it's not working! Even my post is looking odd when I hit "preview" Sorry I had some cute pictures of the kids. Will try later to psot them Please keep Selah in your prayers tomorrow around 1pm when she is having her dental surgery!!!! Thank you all!!

Wednesday, September 19, 2012

Future Plans

Today we had a planning meeting with the team caring for Selah. It looks like she will have her dental surgery on Friday. We are looking at a transfer date of next Tuesday or Wednesday. If everything comes together, we will transfer her to Lakeland Regional Hospital. She would probably be there for a few weeks while we get our home ready for her. Depending on our insurance, we may have to transfer her to s short term nuring place for awhile as our home gets ready for her.

In some ways this is good news but it's going to be hard. We are extremely happy with the level of medical care and professionalism that she has been given here at Strong's. Florida just doesn't compare to the New York in the area of medical care. We are blessed with a really good pediatrician at home and I'm so thankful for him! Lakeland Regional is a good hospital for non acute care for children. We've been really happy with it over the years with Sam. The problem lies more in specialists and other hospitals that we will have to deal with eventually, as well as services needed. Unfortunately I KNOW what lies ahead because I've been the mom of a SN child for almsot 9 yrs. I've had to fight like crazy to get any help for Sam! When he was born, the doctor would not believe me that something was wrong with his eyes.....and honestly it only went downhill from there! I had to fight to get his medical issues dealt with and fight for specialists. I am so not looking forward to what lies ahead. When Sam came home from the hospital on three machines, our pediatrician tried so hard to get me a few hours of nursing and could get no nursing for me. So we have dealt with alot of things over the years. I have an idea of how things are going to be.

We even briefly considered moving up here but felt like it would be too hard of a transition for the other kids. So please pray that things will work smoothly during this transitional time and we get the medical help/services we need for Selah.

We have had some offers to help us on remodeling the house but nothing is really worked out yet. We find it hard to really focus on things like that right now but will have to soon. Many have asked about how they can help and I will let you know when everything is worked out.

Please continue praying for Selah! Thank you all so much.

Tuesday, September 18, 2012

Happy Birthday Shad!! Update on Selah






Great news today! Selah is out of the PICU and in a step down room. She is now on a medicated patch for her blood pressure and thankfully it seems to be helping. She is also getting some meds through her feeding tube for the BP. The idea with the patch is it will give her a steady dose of BP meds so she won't have the highs, she still is high but not too high. Today she stay around 118/60, too high but not like 180/110!!!

Tomorrow we are meeting to discuss the next steps. She was scheduled to have some oral surgery before all of this happened so we are hoping to get it done here. Her teeth/gums are in really bad shape. Strong's has a School of Dentistry and it would not be hard to arrange everything and get her through it. Then we will begin the final arrangements to get her home.

Today was mine and Shad's birthday. We went to Cracker Barrel and ate comfort (for me- fried chicken, fried okra and sweet tea!) food. Then we went and let Shad pick up some Lego sets...probably went a bit overboard but he was so happy! He got four sets of different "Lord of the Rings" Legos. Now he just needs the biggest set to have them all! He has already put together three of them, genius boy:) We first planned on going to the Rochester Zoo but it rained so then we were going to their Children Museum, BUT after getting the Lego sets, he just wanted to come back and put them together. He is a trip, he told me we could go tomorrow! Shad is a blessing to our family and we would not be complete without him. I often wonder do his birth parents think of him? Do they wonder what became of the little boy they left on a street? They missed out on so much but we are so blessed by his life!

So for my birthday I did a little shopping. I have a secret, I'm addicted to leggings/stirrup pants. I'm sorry I was a teen/young adult in the 80's and that was my clothes of choice! So for them to be back, in the stores make me HAPPY! So that was fun to go get them.

But what I wanted more than anything was for Selah to "come back to us"...Jon went and was with her this morning till lunchtime and I went back this afternoon till supper and now he is back over with her. It is nice to be in another room and have less worries about her physically but we miss her. Today when we went out to eat, we missed her, we miss her when we put the other kids in the van. Everything has a different meaning to us now. Today at Target I saw her little car that she loves to ride on a shelf & it was like a knife to my heart. Everything reminds us of her.

Five weeks ago tonight was another rainy night. Jon & I had been at the hospital all day, just like we were today with Sam and Sarah having their eye exams under anesthesia. And we had another birthday, it was Selah's birthday. We had a great dinner at the RMH but we didn't do alot in the way of celebrating it because of the weather and that we were all so tired from being up so early. We planned on doing it on Wednesday....we never got the chance. That just eats at me so bad. She didn't get to really celebrate her 8th bday. She didn't understand birthdays but I wanted to do something really fun just for her. It's something I will always regret, the accident happened early in the day on Wednesday and we had plans for later.

Tomorrow will be 5 weeks, it seems so unbelievable. It doesn't seem like five weeks at all to me. There has been so much going on and we've been busy. Tonight I'm in a somber mood. Will I ever get my daughter back this side of heaven? I don't have the answer for that. I certainly hope that God will heal her little mind. But it is hard to believe it will happen.

Growing up I had a rather crappy lot in life. I didn't really have much of a family, certainly not a "regular" family and that was all I wanted. Then when Jon & I married and finally had a child, that was all I wanted. Then we lost our twins in utero at 22 weeks. Eight years later we had Sam, Then we adopted Shad and now recently the girls. I LOVED having a larger family! There is nothing on this earth I wanted more than to have children. We were just so blessed and thankful for all five of them. It seems like, without getting all weird & "voodoo" christian, that I've been "attacked" in the area of family all my life. It is where I've had my greatest joy and deepest sorrow. Truly, it is something I don't understand at all. I've cherished my kids, been awed by the fact that God gave them to us, and just loved them with everything in me. I've traveled around the world for three of them and carried the other two through the worst pregnancies ever:) They've all come with a price! But it has been so very very worth it for each of them. I fight for my kids, I'm rude and mean ( if I have to be for them) and I'd probably kill without a second thought to protect them...but I can't fix this for Selah!

We are grown ups and can take responsibility. I have to say truthfully that I am scared of the new responsibility that lies before us. We're used to kids with special needs, but this is a whole new ball game. But we can do it, sure our lives will change more but it's not like we are folks who are out and about alot anyhow, we're not running off to Europe (except to adopt kids) or Vegas or wherever....

So we will live and adjust...but the last few days all I can think of is Selah and how unfair this is to her. She was living in an adult mental institution most of her life and had just three months with us to be loved on and cherished before this happened. We did many "firsts" with her...but not enough! We still love and cherish her but she seems to be unaware of her surroundings...unaware of us. Today I saw some kids at the mall and it just made me mad that she can't run and play now. After all she has been through to have to deal with this now... The doctors tell me she is in a "dream like" condition and honestly I hope so, I hope she is unaware of things. She just deserves so much more than this!

The thing that keeps me going is the truth I have written about time and again. This world is not our home, this is not the end, life is but a vapor....life is short, eternity is long.....that is what keeps me going. I want Selah to be healed but if she is not, I am so thankful she will be healed for all of eternity. She will live life fully then. Having that deep faith of an everlasting life, keeps me going. Selah will one day live life fuller than many other people will ever know. One day all tears will be wiped away. Those are the truths I've held close to my heart since Sam was born and really since we lost the twins. that truth is what I'm holding onto now also.

I may cry and weep often on this earth but there is coming a day when I am going to be the happiest person in heaven! I have more to look forward to than most! I will meet my twins, I will see Selah, Sarah, Sam and Shad healed....can you imagine? I can not wait for that day! It will be glorious!!!

But I pray that Selah will be healed on this earth, please continue to pray for her. Pray for her, not so much for our sake, but for her! Pray that she will be able to enjoy life again be able to play with her siblings, play with her toys, play outside in her little kiddie pool, swing on the swing set.... all these things that she just got to enjoy for the first time in her life!!! Can you imagine, living the life she has lived, no family, living in an institution, no one to really care for her and then to have a family for just a few months and then go through such a horrible accident. It just breaks my heart.


Even in my sadness, there is still a ray of hope. How can I adequately explain the peace I have, in spite of the incredible sadness in my heart? I do not have the words to tell you. But I can truthfully tell you it is REAL! I've always been a questioning type of person in all areas, including spirituality/religion. I didn't take everything at face value. I had to know and I can tell you now I know that there is a peace that passes all understanding, it's not just a song to me or words in a sermon. Songs and sermons won't take you too far when life's heartaches hit but His peace will. I can't explain it, I'm even a bit shocked by it to be honest!!!

Please don't think I'm some sort of spiritual giant! I am so NOT!!!! Really Really NOT!!! But I've had some practice in the area of trials and the God who brought me through many others, is bringing me through this one. I've never had a particularly outward faith, in that I've not been some great Pentecostal shouter...I don't even like to pray out loud in front of others, I figure I'm praying to God and it is just Not anyone else's business! So I may not measure up to what some think is "spiritual" but I am committed to following God and He is committed to holding my hand! Thank God that I don't have to measure up to man's idea of what a pastor's wife should be! Now I'm not saying, you can just go live in sin and do whatever, the bible gives us specific guidelines BUT we also don't have to be cookie cutter Christians! But we should live to serve God in every area of our life and allow Him to be Lord of our life. But that doesn't mean we all are alike in every way. I used to be a bit envious of people who could be free in worship, but I learned to be comfortable in my own skin and not try to be someone I am not. That is not me, and now that I don't really think about it, I find it so much easier to enter into worship because I'm not comparing myself to anyone else.

So be who YOU are, live a holy life (measured by the Bible not some man made laws/thoughts) Stay balanced, don't use what I'm saying as an excuse to sin, but as an encouragement to be yourself but live yielded to God. Love your family with everything within you. You do not know when life may suddenly change! Hug your kids, cherish every moment, live life in the light of eternity, when you do that, you will stay as far away from sin as you can and as close to God as you can.

Thank you again for your prayers for our sweet LaLa (our nickname for Selah)

Monday, September 17, 2012

Sept 17 update

Jon spent most of the day with Selah and worked on training on her care. He was able to hold her and love on her. We did an interview with the CBS/FOX station to thank the viewers of the Rochester community for everything that have done. Then I went to the hospital tonight and held her for about an hour and worked on her arms and hands. She seemed to relax into me some.

The only thing she is still dealing with is high blood pressures. They go up and down depending on the times of her meds. She is being placed on a patch to help regulate her BP hopefully. The idea is to keep her medicine constant with the hope that will help. She spiked high last night for awhile. So she is still in the PICU at this time.

Everything else is going good physically. Neurologically there has been no change. Please keep praying for her.

Tomorrow is Shad's 9th bday and my ? Bday LOL. He and I share a birthday. We are taking him to the small zoo here and out to eat. He is really excited. Shad has been such a great kid and so helpful through this past 5 weeks. We want to give him a special day.

Thank you for your prayers. I hope to do a long blog tomorrow, sometimes an idea/thoughts just kinda churn around till I have to write it, I'm telling you blogging is good for your mental status:)

Sunday, September 16, 2012

More pictures from Sunday







I wanted to show all our friends a good picture of Ken and Lynn! Lynn and her daughter had a horrible accident back in May. Both lived and are doing fine! Lynn is ready to head back to Florida soon!!!! We are so thankful that she has recovered so well. (she was here at Strongs for weeks following the accident!)

Next picture, the kids before church. I just want to encourage you to take your kids (and yourself) to church! We have a reason not to be in church but we are there! Many people have no real reason but that it is too hard to get out of bed! Ummmm thaat is so not a reason! Get to church, Get your kids in church. You will be glad that you did!

Next pic is Jon Sam and me by the lighthouse (I have a thing for Lighthouses-must have been that old song ..."there's a Lighthouse on the hillside that overlooks life's seas.." Who remembers that one????

The Lighthouse of Sodus Point NY on Lake Ontario

It was nice to go to church, eat and relax together as a family today.

Some pictures...






Top picture is us with Ken and Lynn Ginnet our dear friends at the Sodus Point Lighthouse. Then Sarah on the grass for the first time ever (I don't put her on the grass, too many bugs and sand spurs etc..in Florida) then Me and then Sarah again smiling in her car seat:) I can only get 4 pictures on my blog at a time for some reason!



Today we went to our friends' church and then with them to the Sodus Point Lighthouse and out to eat at a Farmer's Market and let the kids play for awhile. Then I came back to the hospital and got to hold Selah for about an hour. She seemed to relax into me some. All her vitals are good, blood pressure still a bit high but not too bad. Please keep praying for her


Saturday, September 15, 2012

Anywhere With Jesus


Watch this song


Anywhere with Jesus I can safely go
Anywhere he leads me in this world below
Anywhere without Him dearest joys would fade
Anywhere with Jesus I am not afraid

Anywhere, anywhere ...any little fear I'll never
Know
Anywhere with Jesus I can safely go

Anywhere with Jesus, I am not alone
Other friends may fail me, he is still my own
Tho' His hand may lead me over dreary ways
Anywhere with Jesus is a house of praise

Repeat Chorus

Anywhere with Jesus I can go to sleep
When the darkest shadows round about me
Creep
Knowing I shall waken nevermore to roam
Anywhere with Jesus will be home, sweet home

Today I went for a few hours to the Women of Faith conference in Rochester NY. I'm NOT big into going to conferences, especially women's conferences! It's just Not "my thing" BUT Amy Grant was going to be there and I really wanted to hear her!

She started her selection of songs with the above song "Anywhere with Jesus" I almost fell out of my seat, in the nose bleed section! Our music minister sang that for us our last Sunday before we left for Ukraine. He knew how much I hate to fly and he was encouraging me and kidding me at the same time:) What a coincidence! Not exactly a well known song!

It spoke to me because the words of this song, are so true. Whether I am literally traveling thousands of miles or whether I am walking through a valley...Jesus is with me!

Thank God for His presence! I'm so glad He is with me " Tho' His hand may lead me over dreary ways, Anywhere with Jesus is a house of praise " Those can be empty silly words UNTIL you experience it yourself. When you feel the peace of God even while you are walking over dreary ways, then you know ALL those things you learned in Sunday School and all those songs you sang and all those endless sermons you heard...THEY ARE TRUE!!

Tonight Jon is with Selah. She has been stable although right now her heart beat is high but she probably will be getting her meds soon. Staying at the RMH, one of us (or our wonderful "nanny" ) has to be with our other kids. So the days my friend can't come, makes it a bit more complicated but it's good to be with the kids. They are healing to my heart! Selah will be moved out of the PICU soon, I think they are just waiting on a bed.

Tomorrow as you attend your church (and if you don't have one...find one!) PLEASE put Selah on your prayer list. Ask God to have mercy and to heal her! Thank you for continuing to bring her name up to the throne of God. We are still praying for God to touch her and heal her little mind.

I really want to thank so many people...today we got a gift card from a family in NC. Also I got a pair of hand made slippers from my future daughter in law...(LOL inside joke but I think this young lady ROCKS in many many ways!!!!) I'm wearing them along with my soft thick PJ pants that my friend bought me and I'm wrapped in a blanket that another friend made!!! We went out to eat tonight thanks to someone who left a Colie's Cafe card at the RMH for us...I KNOW I am not going to do all the thank you cards that I should! I hadn't even sent out my thank yous for our adoption and I am so sorry! Believe me I was raised better!!! My Aunt probably is rolling in her grave about now! I had planned to have our family picture made and send it out with a card for everyone who gave to our adoption....I never had the time to get it done...and now I don't think I will ever be able to thank everyone like I should! I am so sorry! We are so thankful, at times your generosity brings us to tears, we don't take it for granted at all. Our kids are just shocked at all the sweet things that have been done for us. I hope even if we don't ever thank you properly, we will remember and reach out to other families who are in crises situations in the future. I think my boys have learned how nice it is and how it makes you feel and they will grow up to do things for others. Thank you all so much!






Dreams of Adoption

If I were asked what my dreams for my life were, I'd say.....to see Selah healed & restored, for our family to stay healthy and close, and to go back to Ukraine to adopt 2 little boys and 1 little girl that caught our hearts....that's all I want in a nutshell....

We had some very tentative plans about adopting again, but they were real enough that we had talked to our facilitator about the children we were interested in. I actually told him we'd let him know if we were going to commit when we came home from our NY trip. We knew we'd have to see some real miracles if we were going to adopt three more kids but we have seen some real miracles of provision in both of our adoptions. We knew what God can do, it seems He moves heaven & earth to help orphans find homes!

Sometimes when I pray I remind God of what He has done for us and what we felt He had placed in our hearts to do. We were willingly to go back and get those three kids and give them a family. Our kids were totally with it and wanted to go get them! So I tell God we need a miracle for Selah in order to be able to do what we felt urged to do...

So I don't know if we will ever be able to adopt again, with the new responsibilities we have but let me encourage you to think about adoption. International adoption is wonderful. When I say it saves lives, I mean it saves lives, real lives... Having had the most beautiful opportunity to walk out the doors of two different orphanages holding my children, I can tell you the feeling is amazing! I think because it so closely mirrors what God does for us when He brings us into His family.

There is such need overseas. When you are there and you see with your eyes, then you become thankful for the safety net of the social care system in America. It may be flawed BUT it is so much better than what many countries have in place!

Thinking about so much tonight, but I just had to share about this. If I had a dollar for every person who has told me "I'd love to adopt BUT...." I say get your BUT out of the way:) there are some valid reasons why people can't adopt but IF it's just you don't think you can afford it or you think it's too hard, then don't let that stand in your way. If you think that you'll get everything perfect in your life and save all the money up to do it, things will never be perfect, Just Do It!

If you read back to Shad's story or the girls' story, you can see we were never at the place where things were perfect-far from it! LOL It seemed the two times we adopted, we were as far as we possibly could be from the perfect place! It looked like foolishness to adopt but we knew it was what we should do. How many of you have had hearts tugged at to adopt but dismissed it? Let me tell you there are real children, lying in orphanages all over the world who need real parents, right this very minute! I've seen hundreds of these children, and I can't look away!

Tonight I want to encourage you to step out in faith,if you feel that tug on your heart, start looking into adoption. Yes it is hard, I will not lie to you, the paperwork is hard, there are many hoops to jump through BUT the end result is so so very worth it!

I read different blogs, stories etc...and some people say different things about having the right motivation for adoption. I don't know what the "right" motivation is. All I know is we loved our kids from their pictures and pushed with everything we could to get to them as soon as we possible could! We wanted to rescue them, just like we'd want to rescue our biological children if they somehow ended up in an orphanage. We worried about the children during the whole process of adoption. Just like we'd worry about our biological kids. With the girls, we got to see them daily but it took over a month before we could take them out of the orphanage and I worried about them obsessively during that time. My biggest fear was that the institution would catch on fire. One night I was crying in our apartment, worrying that something would happen before we could take them out!

It's hard to explain adoption but the kids become your kids from their pictures. Meeting them in the flesh, is more sacred than meeting a president or king. It is such a holy moment. We didn't get Shad's or the girls' first meeting on video, it doesn't matter, it is so in my brain! In both meetings there were tons of other folks there, but I only had eyes for my kids, I couldn't tell you what was happening around me, just like childbirth in that sense of the focus is so on your child. What a precious privilege to have had those experiences!

So if you are reading this blog of mine, there is a good chance that you are interested in adoption. If you are eligible, pray about it, don't let fear hold you back. If you want any personal advice please feel free to contact me at
theclanton5@aol.com If you are moved by the things you have read on my blog, do something, if you can, adopt. If you can't adopt then help another family in some way to bring a child home. I feel the bible is pretty clear that we should help orphans but that is not necessarily why we adopted. We adopted because our children somehow were living in orphanages in other countries and needed to come home! They are not our "project" or "our ticket to heaven" they are our precious children that we are honored to be their parents. We were blessed to be allowed to adopt them and have them in our lives!

It seems people find it hard to believe that we adopted because we NEEDED the kids. We didn't know how much we needed them in our lives. We needed them to be the family we are. We're not saints, not in the least bit but we listened to God and we heard His voice and He told us that our lives would be changed as the children's lives were changed. We had no idea of the joy that would come out of adopting.

Right now our hearts ache because our little girl is injured but she is still our jewel. Truly even knowing how hard this would all be, we are so glad she came into our lives. We hate that she has gone through this, she deserves so much more than this but we are going to still ensure she has the best life.

So as always pray for Selah. But also pray for two little boys and a little girl who are sleeping tonight in an adult mental institution, pray that God will send a family for them. It might not be us, but pray that someone will come for them. All three of them have Downs syndrome. They are precious. We were able to play with the little boys quite a bit but I never saw the little girl out of her bed. So many people are reading my blogs and praying for Selah and us, I know you will add these three children to your prayers. We "named" them Sally, Seth, and Silas. (yes I know we are a bit crazy with the S names but once you start, you can't just quit doing it cause the child you name something else will wonder why they didn't get an S name...) But I have to say after these three names we are out of names:) We try to keep them Biblical but Sally pushes it (it is a derivative of Solomon)


Thank you for your prayers as always! Let me warn you, I started praying for Sarah and 4 days later we were doing the paperwork to go get her:)

Friday, September 14, 2012

ABC news story

http://www.13wham.com/news/local/story/sehlah-clanton-canal/TqDZu-FUMEukRVCjBoGeBg.cspx

Here is the link to the news story we did tonight. If the above link doesnt' work then try to go to Rochester NY channel 13, we were the top story

DISCLAIMER: As far as I know the ABC station in Florida is just looking into partnering with Home Depot and a contractor about adding a room for Selah to our home. I don't think they are going to be building us a new house LOLOLOL So see don't believe everything you read or see on TV!!!! Although if they'd like to build us a new home, that's ok too BUT I just don't know anything about it:)

Friday Update

Selah is still stable. The PT got her up today and Jon was able to hold her for over 30 minutes. This is the first time she has been out of bed since the accident. As soon as a bed becomes available, she will be moved off the PICU unit to a step down room. We should be able to put her in a wheelchair soon and help her to adjust to being in a UP position. It may take her some time to adjust since she has been lying down for over 4 weeks.

Her blood pressures still aren't completely normal. She does have periods of time where her BP is in the normal range but often the BP is above normal but closer to a normal range than it was. Please pray that her blood pressure can be stabilized completely. Her heart rate is near normal most of the time. Everything else is going good physically.

Sam has been fine today, no more puking thank God!!!!

Today we did an interview with the local ABC station. It is our hope that we can share our faith and hope with others. I will post the link later tonight.

Please keep praying for Selah. Pray that with us being able to touch her and hold her that it will trigger some responses. Thank you for your thoughts and prayers!

Thursday, September 13, 2012

LIFE

Selah is doing good. Her blood pressures have been closer to normal most of the day. All her labs are good, her heart rate is still a little high but not too much. It runs in the 120's, which is much better than it was running.

She did do something new tonight. I was looking at her eye and it looked red so I turned on the overhead lights and she squinted her eyes closed! I managed to look at the eye and it was fine. Then I turned off the lights and she opened her eyes. Selah never liked bright lights and would often close her eyes and cover her face if she was in direct sunlight. So it seemed like a normal response from Selah and that was good.

So physically she is doing pretty good, neurologically she needs so much prayer.

Tonight sitting with her, I just felt peace...an assurance that everything is going to be alright. I don't know what "alright" is going to be, but it's going to be alright! What a peace to trust in the Lord. And what is also helps is that we knew before this ever happened, that we respect LIFE and we had had conversations about various public situations and how we would react if we ever found ourselves in any type of situation where we had to make decisions of care and life/death decisions.

Now we never were asked about "pulling the plug" with Selah. She always had brain activity. But we were faced with the question of whether we would put in a trach and g-tube. Evidently some families do not chose to do those things. Since Selah doesn't' have a gag/swallow reflex, she can not swallow her saliva and could choke or aspirate and possibly die. Obviously she can not eat either, so she needed a g-tube for nutrition. Jon and I respect the God given Life inside her and we are committed to her care. In my opinion, since the medical advances are there to help people to live longer, more comfortable lives, then we should use it. If the medical know how is there, we believe we should use it to take care of a person. It was allowed to be created for a reason and we are going to use it to take care of our child.

So honestly we thought about questions like this more in regards to ourselves as adults, not really that we would have a child in a situation like this. But it is a blessing to KNOW what you believe and not to be shaken in that belief if something like this happens. There was never a question in either of our minds about her care or how far to go in saving her. She was without a heartbeat for at least 30 minutes. When they finally got a heartbeat in the ER and she was transferred to the PICU, I was told that she probably wouldn't live through the day. I immediately asked if there was ANYTHING that could be done, any surgery, study, medicine, whatever. The doctor told me that there was a study that she could be enrolled in. where she would be put on cooled sheets and her temperature would be kept within a certain range. I said "lets do it" Then the doctor said he needed to go over everything with me. I was quick to tell him, that he had just told me my daughter was not going to live, he didn't have to tell me anything just get her set up! We have laughed about it since and he told me Selah was entered into the study the fastest that any other child had been LOLOL! I can get a bit aggressive and I was on aggressive overload that day! See I was able to make decisions on my own KNOWING the beliefs and values that my husband and I have. I didn't wonder or think twice about it. I didn't even have to talk to him about it because i knew what he would say!

Why did I know what he would say? Because we have a value system based on the respect of LIFE! Not that we don't believe in a wonderful Eternal Life to come but we believe Life is a gift from God and should be considered precious. We wanted to give our child every chance of Life there was to give! What a blessing not to have to have some moral dilemma! We had no questions...we wanted the doctors to give her the best care to give her a chance at Life.

So our daughter defied the odds. The next day when one of the admitting doctors made rounds I asked him if she would live and he said that he hadn't expected her to be alive when he came on. So again I asked him if he thought she would live and he said he'd have to rethink it....well now more than 4 weeks later she is alive and doing quite well physically.

Now the doctors and medical staff don't expect to see a change in her neurological condition. It's hard for me to believe sometimes that it will change and that she will come back. I understand the medical explanation of her brain damage and the ramifications. During the time she was so critical, I was afraid but I think in my heart that I did expect her to live. It was such a confusing time emotionally that nothing was clear. The way I hear from God, is I try to clear my mind of all the confusion and really try to hear from HIM, not my desires but what He is saying. God has spoken to my heart before, and sometimes it has been a clear NO. When we lost the twins, I knew it was going to happen, God prepared me and I knew in my heart as BAD as I hated it that they were gone. During that really awful time with Selah , I told Jon that I felt like God was saying to me that she would live but I wasn't sure if she would recover. I couldn't hear God's voice on that. I still don't know in my heart what the answer is. I still pray that He will in His mercy touch our wonderful unique little girl and bring her back to us! Sometimes I think maybe I don't hear the answer because I don't want to know the answer...I'm not sure.

I do remember the dream I had right after this accident that we were home and she just "woke up" Now I know that they type of brain injury Selah had with the lack of oxygen is not a type of injury that you just "wake up" from like some traumas to the brain. But it was a good dream and I'd love for it to happen. So we are all just holding onto to Jesus no matter what the future is for us!

So let me share with you, have your heart settled, know what you are believe based on the Bible BEFORE you are faced with any type of situation so you are prepared. I have questioned WHY did God allow her to come back to be in the shape she is in now BUT I only think that because I know how wonderful Heaven is and it's hard for me to see her suffer. But God is the giver and taker of Life, since He allowed her to come back, we rest in that. We are committed to making her life as comfortable and as full of love as possible. We will take care of her and get her the best medical help there is and we will pray for her for God to heal her.

This may sound very simple to some reading this...I'm too tired to give a big long in depth ethical argument but simple is sometimes the easiest... Simply trusting that "this is the way it is".....we are going to make the best out of it. I know from experience that simply trusting God brings Joys that you never dreamed of....So we are simply trusting....



Other Family news

I took the kids out to eat today and we are sitting just starting to eat and relax...THEN Sam made a noise like a burp, then he did it again and threw up a GALLON of puke! I thought I was going to pass out! I had to strip him at the table because there was NO way I was going to pick him up like that!!!! He seems absolutely fine now, I got him back to RMH, gave him a bath and put him to bed. Went and bought a huge cheap plastic table cloth so he won't get anything on their carpet if he gets sick again. Jon came back from the hospital to help me cuz I don't do puke very good. I'm proud of myself that I didn't join Sam, I have been known to do that!

He has been fine since then and ate soup for supper. We won't be going back there to that particular restaurant even if we are allowed LOL But I have to say that was my grossest parenting moment in almost 17 yrs of being a mom:)
It's actually funny to me now but standing in the restaurant, I didn't know what I was going to do!

I've gotten some questions about Shad and Steve. They are missing school but the good thing is Shad is almost a year ahead in his schoolwork so we aren't worried about him missing some time. Steve brought some work with him knowing that there ws a chance he'd miss the first few days of school and the school has sent him some more work also. They go to a private christian school that is working with us.

Sam and Sarah are missing their therapies but they will be able to get back to that when we get home.

Our kids have done well during this time. They really "go with the flow" and are very flexible. We've been here almost 5 weeks and they seem to be fine. It is different living in the Ronald McDonald House than at home. We all six share a room, talk about communal living LOL! Good thing I don't snore (wink wink) RMH is large so there are various tv rooms, we've kinda taken over the one closest to our room, cause we can put in a baby gate and the little ones will stay in there and play with their toys. I cook them breakfast every day, lunch is usually leftovers and most night volunteers bring in the suppers. If not we go out and eat or I cook a simple meal. Jon and I have tried to eat supper with the kids since all this has happened so they feel the comfort of something they are used to. It's been a growing time for our family. I've never believed that you should shield your children from the realities of life, we believe you should use Life experiences to help prepare them for their future. We've been honest with the kids and have answered any questions they've had without unduly worrying them. They have gone up a few times to see Selah but haven't gone in her room because she continues to test positive for MRSA, although she has no symptoms of it. So we are working through this as a family and it has created a tenderness between all of us. We aren't taking each other for granted. Even hard times can become a time of learning and bonding, even through tears.

So thank you for your prayers for our family, please continue!!!!!