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....

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.

Refrain:
On Christ, the solid Rock, I stand;
All other ground is sinking sand,
All other ground is sinking sand.
 

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?

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....

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!

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. 

 

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!!!!!!

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!

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!