My faith is in God..

 

This is a picture of Selah I took today.  She was sitting in her chair following me working with her with PT.  She did great today and responded when she didn't like something I did.  The attending doctor was there for some of it and she said Selah was showing real emotions!  While we hate for her to be unhappy, she definitely let us know she didn't like working out!!!  And that is great that she could show us that.   As you can see she was worn out by the workout! 

So we have had two great days!  Selah still has a long way to go, please know that but we are seeing some positive things happening!!!  Please keep praying that she will continue to improve and that this is just the beginning of a recovery for her.  Doctors still don't give us any promises of improvement but they do acknowledge this as a good sign!  This has been consistent and that is important but there are many areas we need to see improvement in.  What worries me is the there are somethings that are very basic that she does not always do....please pray that all areas will improve!  


Our trust is in God, not what God can do for us but in God!   If she doesn't improve beyond this point, God is still good.  We will still trust Him.  If she is 100% healed, God is still good.  I was talking to someone recently and trying to explain to them our faith is in God.  We are trusting God NOT trusting God to heal her....do you understand what I am saying?   We are not trusting in the promises of God...  Our trust is in God NOT what He can do for us.   What a peace we have, we are not striving or trying to "work" out her healing in our strength...we are not healers....no man is....but we trust the Healer.  Oh I ask Him many times a day to touch and heal Selah but I also thank Him for being with us and for all He has done and just for who He is. 

I do remind God of the parable in Luke 18 1-8   

18 Then Jesus told his disciples a parable to show them that they should always pray and not give up. ² He said: “In a certain town there was a judge who neither feared God nor cared what people thought. ³ And there was a widow in that town who kept coming to him with the plea, ‘Grant me justice against my adversary.’

⁴ “For some time he refused. But finally he said to himself, ‘Even though I don’t fear God or care what people think, ⁵ yet because this widow keeps bothering me, I will see that she gets justice, so that she won’t eventually come and attack me!’”

⁶ And the Lord said, “Listen to what the unjust judge says. ⁷ And will not God bring about justice for his chosen ones, who cry out to him day and night? Will he keep putting them off? ⁸ I tell you, he will see that they get justice, and quickly. However, when the Son of Man comes, will he find faith on the earth?”


I love this parable....I can relate to this woman!   I cry out to God day and night to have mercy on my daughter.  I dont' pretend to have some great  knowledge that God is going to heal her.  I don't  claim it....but I put my hope and faith in God and I will not be disappointed.   I will not be disappointed either way....because I know there is coming a day in the very near future when all my children will be healed...my hope is an eternal hope, not a temporal hope based upon what happens on earth! 

What amazes me is the Christians who don't understand this hope...they are so focused on the here and now, thinking that God promised them a rose garden....it's sad.   Of course I want my daughter restored but I can trust God whatever the outcome is....He is the author and finisher of my faith.   I can say this past year, has been a year like no other in my life.  I have seen the greatest joy and the greatest sorrow all within the last few months.  I have seen God move in unbelievable ways...and all I can say is my faith is in God, the creator of heaven and earth.  He is the One who has lead me thus far and will continue to lead....

On the way home from Ukraine, we flew over Poland and the beautiful Polish Mountain region,  there was so many emotions going on in my heart.  I just remember my very soul realizing that the same God who had created the mountain  and land we were flying over, the land that had so much of man's history on it, was the same God who worked out every detail and provided everything we needed for our adoption.  It just shook me to my core.  You know how you have those moments when "eternity" is in your heart and for just that second, you can grasp the depth of God , for just a second in time....that was one of those moments for me.   So I have been to the mountaintop this year.....and I have been in the very valley of the shadow of death...but I will not fear...

What can I say about God....He is real!  Going through this valley makes me look up....I look to Him.  And it is so sweet....there are not words to describe the "knowing' I have in my heart.   I wish I had the words to adequately explain to you what is in my heart.  All I can say is I am so very thankful for the Peace that passeth all understanding, the peace that is there when my heart breaks, the peace that only God can give. 

You might ask how I got this peace...PLEASE know I am NOT some major perfect Christian. far from it...let's just say my husband calls me Peter sometimes.....and if you don't get it, go read your bible.  Peter was a hot head, he cursed. he was a mess at times....but God used him.  I've gone through valleys in my life...but there came a time when I decided I was just going to trust God NO MATTER WHAT happened...and when I did that, all heaven broke loose in my life.  No I didn't start running the aisles or shouting but I had something that carried me through things that not many people had walked through....I grasped God and I grasped eternity and realized that no matter what happens in life we have that Blessed  Hope....  When I grasped that truth deep in my heart, I was able to face uncertain times with the assurance God would see us through.   And He has!!!!  God has been nothing but faithful to us!  That is why I can praise Him in the hardest time of my life.  

  I encourage you to reach out to God.  Get to know the real God.  Don't listen to some preacher that is going to tell you life is just going to be perfect for you.  Read the bible, study it with a commentary,.  too many preachers today on tv and in pulpits want you to think you can command your destiny, that you can even command God....I dont' want to serve a God I can tell what to do to!!!!  I want a God that is like the One in the bible, who is above all things...not some weak God who does my bidding....I serve a God who is the God to the hurting.  A God that came down to earth and was "a man acquainted with sorrows"  One who holds the earth in His hands....but one who listens to a mother's cry.....

I've included an old song in the link below.  It was sung alot when I was a child.  I remember it being sung with much more fervor:)  But I love the words.....


"I'm trusting to the Unseen Hand that guides me thru this weary land.
And some sweet day I'll reach that strand
Still guided by the Unseen Hand'


http://www.youtube.com/watch?v=Pt0jokat9SY&feature=fvwrel


That Unseen Hand has guided me without fail for many years and I trust Him to continue to do so! 


The conversations between the new hospital Nemour's and here are continuing and we are really excited about all we have read about them.  It seems this might just be the right place for her.   We should have an answer in a few days. 

So please keep praying for Selah, all over the US and all over the world.  Lift her name up to the throne of Grace, for us.  Thank you so much!!!


 

Great News!!!!!!

This morning during PT, Selah grimaced, opened her mouth as if to say no (she can't really speak above the trach right now) and cried!  This is HUGE!  Of course we hate that she was upset BUT it showed that she can show emotions which are a response "above the brain stem"    We are so excited and hopeful!!!

On top of this great great news, we were contacted by a staff person through a friend.  A new hospital is opening in Orlando, Nemour's Children's Hospital.  They have the same team approach as Strong's does.  Sam had seen the geneticist there and she gave us his correct diagnosis after us wasting our time with another one for years!  We had an appointment for both girls to be seen last month that we unfortunately had to cancel.  We did not know another hospital was being built. we just thought it was a doctor's group associated with other groups.  The conversations back and to between hospitals have started and we should have an answer by Wednesday if they will accept her.  If they do, she will be their first patient.  They are known for their research and their academic team approach.  We are thrilled and think maybe this is the reason we never got a response from Lakeland.   It will be harder for us as a family as Nemour's is the farthest of the hospitals in our area that we have considered but this might be the absolute best place for her.  That is what matters the most at this point. 

So our prayer today is that God will touch our baby and help her have more real responses!!!!  And that He will open the right door for us in Florida.  I had been praying that if there was somewheres else we should take her that it would be made clear to us.  We are so thankful for his guiding hand through this dark valley. 

This is a real roller coaster ride for us, some days are just wonderful and some are not...today is a GREAT day and we have renewed hope for Selah!   I can't wait to go over there later, as we take turns staying with her.  I hope she will give me some responses!!   Thankyou for your prayers!!!!!!!

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 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:)

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!

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!