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. 

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!

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!

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!

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