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!

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....

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.