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!!!!!
"Our life maybe a crazy life but it's our life" I'm married to a pastor of a small rural church, who is also the prison chaplain. We have 5 kids, each with their unique story. I love gardening & we all love the outdoors. Our life is not the way we planned it to be, but we are learning to trust God in every area. Come and read about our life as we live it to the fullest!
Thursday, September 13, 2012
Wednesday, September 12, 2012
Tv Interview
http://www.whec.com/news/stories/S2763794.shtml?cat=566
I hope you can click on here, if not try this one....
http://www.whec.com/news/stories/S2763794.shtml?cat=566
I looked up Rochester Ny channel 10 and it's the top story
LOVe that we were able to share our faith and be able to thank RMH for everything :)
I hope you can click on here, if not try this one....
http://www.whec.com/news/stories/S2763794.shtml?cat=566
I looked up Rochester Ny channel 10 and it's the top story
LOVe that we were able to share our faith and be able to thank RMH for everything :)
Busy Day~
Pictures-Sam waiting for Dr A
Jon, Dr Aquevella, Sam and Yvonne
Selah had a good day! Her blood pressure is closer to a normal level, it seems that the new blood pressure medicine is helping her thank God. Everything else physically is going good too. We are thankful! Please continue to keep our dear girl in your prayers. We are still praying for a total miracle for her! Thank you for your prayers!
Today Sam had an appointment with Dr Aquevella, to make sure that his eyes were ok following the accident. Sam has corneal implants in both eyes so we have to always watch for infection or any type of problems. We try not to get any water in his eyes whatsoever. His eyes are fragile and more susceptible to infection. We are thankful that when he was in the dirty canal water, he didn't pick up any infections from it. His pressures were normal too!
We love seeing our dear Dr Aquevella. He used his God-given gifts to give our son sight...what can you say about a man like that?? We appreciate him with all our hearts! The gift he gave to Sam, PRICELESS! He gave Sam SIGHT! And Sam enjoys every bit of it and uses it to do much mischief and we LOVE it!!!!!! Thank God for Dr Aquevella!!!!!
We did an interview with the local Rochester tv station Channel 10 and it will be shown tonight. We plan on doing interviews with all the local stations in the next week or so. We haven't responded to any of their requests before because we just couldn't handle doing them but we want to thank the Rochester Area for all they have done for our family and all the kindness shown. What a great town this is:) We've always thought highly of Rochester and these past few weeks have just shown us that there is plenty of "Northern Hospitality" too!!!!!
As we were doing the interview with Ms Adams from Channel 10, she asked some real questions about our faith and how we are dealing with this. I thank God that we can say that we serve a Good God, One who is with us no matter what is going on in our life. The last few days I have been so very sad, missing my little girl's funny litte self, my heart literally aches with in me. I've never been a "crier" but now my tears flow like a river at times. But tonight I can confidently tell you that God is good! His mercies endures forever! No I don't see the miracle I want right now but our life is but a vapor...so even if Selah is not healed on this earth, she will be healed for ALL eternity! I am so thankful for the eternal hope that we have in God! So I might sit in Selah's room and do nothing but cry at times but even tho my heart is breaking, I truly can tell you I trust God! What a precious Lord we serve! The presence of God is so real and true, I can't hardly believe the deep peace I feel despite the sorrow. No one can ever tell me that God is not real!!! Because without God I would be beyond a mess at this time! In the past, I've tried to handle hard times on my own and it was a MESS! What a difference to "lean upon the everlasting Arms"
So if you think I'm strong, you're wrong! It's God's strength that is holding me together!!! And the wonderful thing is YOU can also have this kind of peace in the midst of your storms. Turn your life over to God and just get as close to Him as you can, don't let any bitterness into your heart. It's a choice. I chose throughout the day NOT to get bitter, NOT to turn away from God in anyway in my heart. I say this all the time but I've been bitter and I do NOT plan on going back there!! Daily I throw myself on God and I depend on Him. He's a God that is dependable. When I can look at life through the lens of eternity, it is a bit easier to handle heartache. Sorrow is fleeting when we think of that which is to come...there is coming a day ....when all is made right and I'm so thankful for that. But also serving God, gives us strength for today, and even through this God's spirit is so sweet and tender.
Love the verse 1 Peter 4:12
Beloved, do not think it strange concerning the fiery trial which is to try you, as though some strange thing happened to you; but rejoice to the extent that you partake of Christ’s sufferings, that when His glory is revealed, you may also be glad with exceeding joy
And this one...
1 Peter 1:5-7
In this you greatly rejoice, though now for a little while, if need be, you have been grieved by various trials, that the genuineness of your faith, being much more precious than gold that perishes, though it is tested by fire, may be found to praise, honor, and glory at the revelation of Jesus Christ,
So when trials come, we shouldn't be surprised by them but we should expect them and trust God through them.
Tuesday, September 11, 2012
Quick update
Today has been a good day physically for Selah. Her blood pressure is staying nearer to normal range. She seems to be reacting good to the new meds. Since she is responding to this medicine, it seems to point out that this problem has been caused by her brain injury. So there was not a physical problem that caused this but more her brain responding to the injury:(
So we continue to ask you all to keep her in your prayers. Selah needs a touch from God to heal her brain.
Thank you all for your prayers.
So we continue to ask you all to keep her in your prayers. Selah needs a touch from God to heal her brain.
Thank you all for your prayers.
Monday, September 10, 2012
Nightly update pray for her neurological condition
Well Mommy had a rough day but physically Selah had a better day. It seems she is responding better to the new BP meds and her BP is near normal range. It does change throughout the day when it wears off. She still is breathing on her own and keeping her oxygen levels up to 100%! She is at her goal on her g-tube feeds and has had no problem with it. Her heart rate has come down to a near normal range the last few days. So we just need prayer that she will remain stable and that her BP can continue to be controlled. She finally had the EEG and they do not feel she had any seizure activity.
The biggest prayer we need is that God will touch and heal her neurologically ! Today a doctor basically told me "this is where she will be". Of course this is the same doctor who told me she would not live through the day of her accident so I can put it into perspective...
So if you wonder where she is....she is in a vegetative coma. She can breathe on her own but that is it. Her limbs have already stiffened, they feel like wood and she rarely moves except for movements that affect her whole body. They are not "good" movements, they are the kind of movements that show she has massive brain damage. She can not swallow. She has rare periods when it seems she responds to us but they are few and far between. she is not constant with responses like she needs to be. The neurologist who read her EEG today but it rather bluntly....he compared her EEG to a "normal" 8 yr old and said if it were normal, she'd be like a car running on all 6 cylinders. Taking into account her delays, he compared what he thought her EEG would look like , maybe a car running on 2 or 3 cylinders...where she is now...it's like she is running on a half of a cylinder....Her EEG shows massive damage, very slow responses...Hard news to hear for me and for me to write to you...but you need to understand where she is at.
So now you know where she is at and how to pray! We need to see more response and we need to see her limbs relax. It is so very hard to see her like this. You have no idea. Just looking at pictures of her, tear at my heart.
We feel the doctors do everything that can be done that is safe for her. She is on several meds, some to relax her body/limbs, she has Pt and OT, she has splints on her hands so that won't curl up. She wears boots on her feet so the toes won't point out. We play music and interact with her. There is nothing else to be done....She needs a touch from God!
There is no hope for her except in God. We have no one to turn to but Him. I'm so thankful He is our refuge and our strength, a very present help in time of trouble! All I can say is that scripture is true. I promise you it's true!!! Thank God it's true! This God that I serve does fulfill His promises! So if you wonder if God is real, let me tell you He is. He is the only ONE keeping me sane:)
Thank you for praying for Selah! Please keep her in your prayers! We so appreciate your prayers!
BTW it is COLD here in Rochester NY! Tomorrow it will be in the 40's, we think it's kinda neat for it to be so cold in September, the kids are amazed:) Tonight I'm wrapped up in a nice blanket that a friend sent the girls, I'm borrowing it!
The biggest prayer we need is that God will touch and heal her neurologically ! Today a doctor basically told me "this is where she will be". Of course this is the same doctor who told me she would not live through the day of her accident so I can put it into perspective...
So if you wonder where she is....she is in a vegetative coma. She can breathe on her own but that is it. Her limbs have already stiffened, they feel like wood and she rarely moves except for movements that affect her whole body. They are not "good" movements, they are the kind of movements that show she has massive brain damage. She can not swallow. She has rare periods when it seems she responds to us but they are few and far between. she is not constant with responses like she needs to be. The neurologist who read her EEG today but it rather bluntly....he compared her EEG to a "normal" 8 yr old and said if it were normal, she'd be like a car running on all 6 cylinders. Taking into account her delays, he compared what he thought her EEG would look like , maybe a car running on 2 or 3 cylinders...where she is now...it's like she is running on a half of a cylinder....Her EEG shows massive damage, very slow responses...Hard news to hear for me and for me to write to you...but you need to understand where she is at.
So now you know where she is at and how to pray! We need to see more response and we need to see her limbs relax. It is so very hard to see her like this. You have no idea. Just looking at pictures of her, tear at my heart.
We feel the doctors do everything that can be done that is safe for her. She is on several meds, some to relax her body/limbs, she has Pt and OT, she has splints on her hands so that won't curl up. She wears boots on her feet so the toes won't point out. We play music and interact with her. There is nothing else to be done....She needs a touch from God!
There is no hope for her except in God. We have no one to turn to but Him. I'm so thankful He is our refuge and our strength, a very present help in time of trouble! All I can say is that scripture is true. I promise you it's true!!! Thank God it's true! This God that I serve does fulfill His promises! So if you wonder if God is real, let me tell you He is. He is the only ONE keeping me sane:)
Thank you for praying for Selah! Please keep her in your prayers! We so appreciate your prayers!
BTW it is COLD here in Rochester NY! Tomorrow it will be in the 40's, we think it's kinda neat for it to be so cold in September, the kids are amazed:) Tonight I'm wrapped up in a nice blanket that a friend sent the girls, I'm borrowing it!
Shad
this is the picture of Shad meeting Selah.
http://myreallifebyyvonne.blogspot.com/2009_03_01_archive.html
I was asked about Shad's adoption story and you can go to the post above for it. Or scroll down to the very first month I blogged for his sweet story
Morning update for Selah:
They are going up on her BP meds, they feel that it is just her brain responding to the injury and she may always have high blood pressure and need meds. Everything else is stable.
The morning has been rough for me. Hearing all the problems/issues that we face...feeling really really low right now. I can not express to you how hard it is to see our daughter like this. I'm used to kids being on wires/IVs etc...I mean Sam came home with a bunch of machines but I think the difference was knowing they would one day be gone. Knowing this is where she is without a miracle is very very hard.
So again I ask, PRAY for Selah!!!!
Sunday, September 9, 2012
My Thoughts....
Since I was a child, I would think deeply about God and the things of God. Obviously God was calling me as a child to devote my life to Him. All I wanted to be was a pastor's wife:) Well I got that wish LOLOL! Then found out I was crazy for wishing it! But when others were thinking about various other things, I'd want to debate scripture. I look back now and laugh at myself but that was what was interesting to me. I always wanted to "rightly divide the word of truth" Even as a kid, I wanted to know answers WHY about many things in scripture.
Healing was never a big deal to me. Although I was raised in a pentecostal church, it just didn't come up in my life much. I was young, healthy...then we lost the twins and while healing was a secondary issue with them, my biggest was the whole question of suffering and WHY did we have to go through their loss! As I've said before I worked through that over years...then came Sam!
The whole issue of healing came and slapped me in the face! Now I grew up being taught all about healing and how it is for today. But I never really saw any true healings. That was my experience. Now we had a sick little blind, mentally delayed son....what did we do about it? Well we prayed, we had others pray, we even took him to a few meetings where ministers prayed for healing...Along the way, I came to believe that Sam was "fearfully and wonderfully made' God made Sam just like he was...a very very precious and special boy. He has Peter's Anomaly and a rare deletion in chromosome 4...he is probably one of the most rarest gems God ever made.....Was that a cop out? Not to me, I felt a total peace and acceptance of the situation. We were thrilled with him and there were times when he was sick or had an issue with his eyes after surgery that we prayed for God to touch that part of him. Honestly I can't imagine him any different than he is right now and just absolutely adore him!
I know we have friends/acquantices in the "faith" community who look down on us for having a handicapped child. Although NONE have ever had the nerve to say anything to our face (probably a bit scared of me LOL) but I feel we have been given a treasure that is so rare others just don't understand it. I've seen looks of others within our particular Christian circle, that I'd like to slap off their faces but I just roll my eyes and think of all they are missing with such a limited view of the graciousness of God. I'm sure some think we just don't have enough faith to see our son healed. Or maybe there is something wrong in our lives and that is why he was born with these issues.... There aren't many people who think like that, and certainly no one we would choose to be around, but they are there...on the fringe...
BTW, we think that children with handicaps are so special and close to the heart of God that we chose to go and adopt some more and bring them into our family! We were drawn to Shad, Sarah and Selah BECAUSE of their handicaps NOT because we necessarily wanted more kids! But they were the kids we needed to make up our family!
So now we are facing this....Selah went from being a special needs child to a child who is greatly handicapped...one who doesn't even seem to know we are there with her....How do we deal with this and the question of healing??????
If God spoke to my heart and I knew it was Him saying Selah would be healed, I'd proclaim it. God has given me faith for crazy things before like going to SEC and both Shad and the girls adoption as well as the rebuilding of our church ( more than $150,000 of work and we are debt free)
God hasn't spoken to either of us like that for Selah. We do not believe that God is a genie in a bottle and will just do whatever we say IF we say it enough or if we do certain things... We trust God through the difficulties.
God gave me a clear word in the mall that day, do not be afraid. He didn't promise that we'd have some great miracle...He didn't say He'd deliver us out of the situation, He just said "not to be afraid" that is what I'm clinging to...that no matter the outcome, He will be with us and we won't be afraid. I think that tends to be more real life than claiming a miracle.
I just keep praying that God will show mercy and I do remind Him of some things I've prayed for over the years, especially the last few months. So many times since we got the girls, I'd just thank God all throughout the day and before I'd go to sleep. I'd tell Him how happy I was and that ALL I asked for our family was to stay healthy and all be together for a long time. I can't tell you how many times I've prayed that specific prayer over the past few months. I'd never really prayed like that before... I told God that I didn't care about money, or whether our church was "successful" or where we lived or anything except to keep us all together, healthy and a long life....
I remind God of that prayer throughout my day...that prayer seemed to come from within my very being. It was not a prayer of fear or worry, just thankfulness and contentment....I was totally content with my life. We live in a tiny house, barely big enough to qualify for more children on our homestudy. My husband pastors a sweet church but a small one that doesn't seem to grow much no matter what we do, he works full time as a chaplain and hasn't had a raise in 6 or 7 yrs (thanks to all the budget problems) we live on a tight budget BUT we were sooooo happy and content. We didn't worry about the future, we didn't worry about finances, we didn't worry about much at all...we were just happy and content in our life. We wouldn't ever be on the cover of Charisma magazine or even our denominations' magazine for the most successful growing church, not alot of people knew our names, but we were faithfully doing the work of the kingdom. Jon was happy as a chaplain, he loves his inmates:) our kids were all settled and doing great...there was nothing, NOTHING that I desired EXCEPT for us to stay healthy and be together....I was content, I had found the secret of being content. Many times in my life I was not content....I was always looking ahead, wanting more, not necessarily material things, that has never been a big thing for me. But always wanting to "get ahead", be a success ,even in minsitry.... But here , out in the swamp (not really IN the swamp but mighty near) with five kids, in a tiny house, I found that elusive thing, contentment.
So now what do I have? Tonight is four weeks we have lived in the Ronald McDonald House, three and a half weeks since the accident with no real end in sight. My husband and I take turns taking care of Selah and the other kids here....Our kids are so flexible, I can't tell that any of them are stressed at all and I thank God that they are the kind of kids who just "go with the flow" But it's different living like this and dealing with all of this. Talk about living in a fishbowl! Tonight I went for a walk (yeah my foot is better-long story but I had THREE foot surgeries this summer and still have some issues that will have to be addressed when we get home sometime) but I just had to have a quiet place to cry out to God alone. I actually walked down by the Canal, past the area I think the accident happened but even at dusk on a cold (to me) night there were people around. So it's not the easiest place to be in to be dealing with all of this but it's ok. It's not home, our quiet little piece of the world.
I know that God is a God who listens. I do trust Him with my life, with my children's lives. He has been with me all the way through life, leading me, guiding me in so many many ways. I can look back and see the Hand of God through some deep valleys and through mountaintops too. So I don't have the testimony of HUGE miracles "the blind see, the deaf hear, the lame are walking" but I have the testimony that God is with me even through "the valley of the shadow of death" He has been there in the good times and the bad times. He has brought me out of things, He has provided for our needs. When we adopted Shad, there were complicates in my travel home and I believe God sent a real angel to help me and Shad...I shared it back awhile ago in a blog. I believe He meant for us to adopt these precious girls and provided all we needed for it. I believe He sent someone to give me a word (I'm almost thinking she was a angel also- but maybe not, maybe just someone who had the courage to come up to a complete stranger and share "Your family will be going through something big in a a few months and God wants you to know "do not be afraid!" Many will see...."
So I don't know what is going to happen. Maybe God will raise Selah up and heal her completely. Maybe we will have to walk this harder road with her. I don't know....I know what I want! I want Selah back 100% to her funny little self! Selah was delayed, maybe about a 12-18 month level. Some of the delay may have been because of being instiutionzed for years but she truly had real delays and would have never been "normal" but that was FINE with us! She was the funniest little girl and so cute! I know I write about her in the past tense but she is not that little girl anymore, she is so far away from us. That is the hardest thing for me to deal with.
So yes I cry out to God for healing but I trust Him regardless of what happens. God doesn't heal everyone, I don't have all the answers all I can say is I trust Him. Right now I have no real answers...but I trust Him. I try to look to eternity...even when everything within me is screaming for what I had, I try to look to THAT day when all tears are wiped away...
Is that just denial? Am I just trying to escape reality? I don't think so. I realize in this fallen world, things are going to be hard. No one promised us a rose garden. I read a blog of a friend today and she mentioned how ALL of the disciples of Jesus died horrible deaths. And the one who wasn't killed was exiled to an island for years and years, not an easy life! So if Jesus died on a cross and all his disciples had hard times, who are we to think we are going to sail through life and just live a hunky-dory life? That is not how it works! I think that is the problem with the church world today. We have ministers promising us things that God never promised us! Yes God will give you a wonderful enriching life but it may not be the life you planned it to be! I'm sure all the disciples knew God in a deep way and treasured the life that God gave them but it wasn't an easy life. If you take the Bible IN CONTEXT which means, learn to understand the bible as it was written and what the bible really means. for example , you can't just pick up the bible and open it randomly and pick a scripture out and say this is what God is saying to me. Ever heard the old joke about the man who did that and the first verse he picked was "Judas hung himself" well he didn't like that so he tried it again and the next verse he picked was "And go and do likewise"...that's funny but I know folks like that. Or my most annoying thing is when folks say "well God won't give you more than you can bear" and think that is a scripture...it is NOT!!!!! In that passage of scripture in I Corinthians 10:13 Paul is talking about TEMPTATION! And it really says is that temptation is common to all men and that " God will not allow us to be tempted above that which we can bear but with every temptation He will provide a way of escape." So PLEASE never say that to me to try and "comfort" me....it drives me CRAZY!!!!!!!!! Sorry my soapbox........
So we are trusting and that is not easy right now. Sometimes it is an hourly struggle for me. One hour I can reaffirming my faith, the next I am crying out to God saying "God do you remember me?" I'm not a saint at all. I shrink from learning about Selah's tubes and the care of them. Jon has started learning, and I just can not right now. I do NOT want to learn to do them, everything in me wants my Selah back. But I know I will have to learn how to take care of her. It's not that I don't want to take care of her but I hate the tubes, hate that she has to have all of this. Hate that even with all of this she is having health issues....I'm mad! And I'm not sure of who or what I'm angry with I'm just mad that this little girl who has gone through HELL has to deal with this now. Sometimes I'm glad she seems unaware of things...I hope she doesn't know much of what is going on with her physically right now. I'm drawn to her I want to touch her and hold her and try to as much as I can despite the tubes, so don't think I've turned away from her. It's not that, I just hate what the tubes represent.
This is so hard, if I thought there was a magic formula that would bring her back to us, I'd probably do it. But there is not, there is no where in scripture that gives us a magical formula. In fact one of my dear friends did a huge study on FAITH and in more than 50% of all healings that Jesus did, it was the faith of others NOT the patient that was mentioned . I find that interesting....so I ask you all to pray. Pray for Selah, pray that God will look upon her in mercy and heal her.
All I know is I'm going to trust God and "not foolishly charge God" with things. I think I'm gong to start studying the book of Job. There are many truths in there to learn. Job trusted God and despite what was going on, he didn't foolishly charge God with anything. But he did question God at times.
Our story has become public, and although I will always be honest in my writings, I do want to point anyone who hears or reads our story to Jesus. We're not perfect people. We are in pain and dealing with the hardest thing we have ever dealt with but we can still say God is good. Our circumstances do not change who God is...and His peace has surrounded us throughout this horrible time like a a blanket. My hope for everyone who reads this is that they will experience the peace of God in their hard times like we have.
My husband likes to sing a old song that goes "This peace that I have , the world didn't give it and the world can not take it away" That is so true. Although our hearts are breaking, we still have peace. That is something I can not explain but it is so true!
Please pray for Selah. Her blood pressures remain high and pray that she returns to us!
Healing was never a big deal to me. Although I was raised in a pentecostal church, it just didn't come up in my life much. I was young, healthy...then we lost the twins and while healing was a secondary issue with them, my biggest was the whole question of suffering and WHY did we have to go through their loss! As I've said before I worked through that over years...then came Sam!
The whole issue of healing came and slapped me in the face! Now I grew up being taught all about healing and how it is for today. But I never really saw any true healings. That was my experience. Now we had a sick little blind, mentally delayed son....what did we do about it? Well we prayed, we had others pray, we even took him to a few meetings where ministers prayed for healing...Along the way, I came to believe that Sam was "fearfully and wonderfully made' God made Sam just like he was...a very very precious and special boy. He has Peter's Anomaly and a rare deletion in chromosome 4...he is probably one of the most rarest gems God ever made.....Was that a cop out? Not to me, I felt a total peace and acceptance of the situation. We were thrilled with him and there were times when he was sick or had an issue with his eyes after surgery that we prayed for God to touch that part of him. Honestly I can't imagine him any different than he is right now and just absolutely adore him!
I know we have friends/acquantices in the "faith" community who look down on us for having a handicapped child. Although NONE have ever had the nerve to say anything to our face (probably a bit scared of me LOL) but I feel we have been given a treasure that is so rare others just don't understand it. I've seen looks of others within our particular Christian circle, that I'd like to slap off their faces but I just roll my eyes and think of all they are missing with such a limited view of the graciousness of God. I'm sure some think we just don't have enough faith to see our son healed. Or maybe there is something wrong in our lives and that is why he was born with these issues.... There aren't many people who think like that, and certainly no one we would choose to be around, but they are there...on the fringe...
BTW, we think that children with handicaps are so special and close to the heart of God that we chose to go and adopt some more and bring them into our family! We were drawn to Shad, Sarah and Selah BECAUSE of their handicaps NOT because we necessarily wanted more kids! But they were the kids we needed to make up our family!
So now we are facing this....Selah went from being a special needs child to a child who is greatly handicapped...one who doesn't even seem to know we are there with her....How do we deal with this and the question of healing??????
If God spoke to my heart and I knew it was Him saying Selah would be healed, I'd proclaim it. God has given me faith for crazy things before like going to SEC and both Shad and the girls adoption as well as the rebuilding of our church ( more than $150,000 of work and we are debt free)
God hasn't spoken to either of us like that for Selah. We do not believe that God is a genie in a bottle and will just do whatever we say IF we say it enough or if we do certain things... We trust God through the difficulties.
God gave me a clear word in the mall that day, do not be afraid. He didn't promise that we'd have some great miracle...He didn't say He'd deliver us out of the situation, He just said "not to be afraid" that is what I'm clinging to...that no matter the outcome, He will be with us and we won't be afraid. I think that tends to be more real life than claiming a miracle.
I just keep praying that God will show mercy and I do remind Him of some things I've prayed for over the years, especially the last few months. So many times since we got the girls, I'd just thank God all throughout the day and before I'd go to sleep. I'd tell Him how happy I was and that ALL I asked for our family was to stay healthy and all be together for a long time. I can't tell you how many times I've prayed that specific prayer over the past few months. I'd never really prayed like that before... I told God that I didn't care about money, or whether our church was "successful" or where we lived or anything except to keep us all together, healthy and a long life....
I remind God of that prayer throughout my day...that prayer seemed to come from within my very being. It was not a prayer of fear or worry, just thankfulness and contentment....I was totally content with my life. We live in a tiny house, barely big enough to qualify for more children on our homestudy. My husband pastors a sweet church but a small one that doesn't seem to grow much no matter what we do, he works full time as a chaplain and hasn't had a raise in 6 or 7 yrs (thanks to all the budget problems) we live on a tight budget BUT we were sooooo happy and content. We didn't worry about the future, we didn't worry about finances, we didn't worry about much at all...we were just happy and content in our life. We wouldn't ever be on the cover of Charisma magazine or even our denominations' magazine for the most successful growing church, not alot of people knew our names, but we were faithfully doing the work of the kingdom. Jon was happy as a chaplain, he loves his inmates:) our kids were all settled and doing great...there was nothing, NOTHING that I desired EXCEPT for us to stay healthy and be together....I was content, I had found the secret of being content. Many times in my life I was not content....I was always looking ahead, wanting more, not necessarily material things, that has never been a big thing for me. But always wanting to "get ahead", be a success ,even in minsitry.... But here , out in the swamp (not really IN the swamp but mighty near) with five kids, in a tiny house, I found that elusive thing, contentment.
So now what do I have? Tonight is four weeks we have lived in the Ronald McDonald House, three and a half weeks since the accident with no real end in sight. My husband and I take turns taking care of Selah and the other kids here....Our kids are so flexible, I can't tell that any of them are stressed at all and I thank God that they are the kind of kids who just "go with the flow" But it's different living like this and dealing with all of this. Talk about living in a fishbowl! Tonight I went for a walk (yeah my foot is better-long story but I had THREE foot surgeries this summer and still have some issues that will have to be addressed when we get home sometime) but I just had to have a quiet place to cry out to God alone. I actually walked down by the Canal, past the area I think the accident happened but even at dusk on a cold (to me) night there were people around. So it's not the easiest place to be in to be dealing with all of this but it's ok. It's not home, our quiet little piece of the world.
I know that God is a God who listens. I do trust Him with my life, with my children's lives. He has been with me all the way through life, leading me, guiding me in so many many ways. I can look back and see the Hand of God through some deep valleys and through mountaintops too. So I don't have the testimony of HUGE miracles "the blind see, the deaf hear, the lame are walking" but I have the testimony that God is with me even through "the valley of the shadow of death" He has been there in the good times and the bad times. He has brought me out of things, He has provided for our needs. When we adopted Shad, there were complicates in my travel home and I believe God sent a real angel to help me and Shad...I shared it back awhile ago in a blog. I believe He meant for us to adopt these precious girls and provided all we needed for it. I believe He sent someone to give me a word (I'm almost thinking she was a angel also- but maybe not, maybe just someone who had the courage to come up to a complete stranger and share "Your family will be going through something big in a a few months and God wants you to know "do not be afraid!" Many will see...."
So I don't know what is going to happen. Maybe God will raise Selah up and heal her completely. Maybe we will have to walk this harder road with her. I don't know....I know what I want! I want Selah back 100% to her funny little self! Selah was delayed, maybe about a 12-18 month level. Some of the delay may have been because of being instiutionzed for years but she truly had real delays and would have never been "normal" but that was FINE with us! She was the funniest little girl and so cute! I know I write about her in the past tense but she is not that little girl anymore, she is so far away from us. That is the hardest thing for me to deal with.
So yes I cry out to God for healing but I trust Him regardless of what happens. God doesn't heal everyone, I don't have all the answers all I can say is I trust Him. Right now I have no real answers...but I trust Him. I try to look to eternity...even when everything within me is screaming for what I had, I try to look to THAT day when all tears are wiped away...
Is that just denial? Am I just trying to escape reality? I don't think so. I realize in this fallen world, things are going to be hard. No one promised us a rose garden. I read a blog of a friend today and she mentioned how ALL of the disciples of Jesus died horrible deaths. And the one who wasn't killed was exiled to an island for years and years, not an easy life! So if Jesus died on a cross and all his disciples had hard times, who are we to think we are going to sail through life and just live a hunky-dory life? That is not how it works! I think that is the problem with the church world today. We have ministers promising us things that God never promised us! Yes God will give you a wonderful enriching life but it may not be the life you planned it to be! I'm sure all the disciples knew God in a deep way and treasured the life that God gave them but it wasn't an easy life. If you take the Bible IN CONTEXT which means, learn to understand the bible as it was written and what the bible really means. for example , you can't just pick up the bible and open it randomly and pick a scripture out and say this is what God is saying to me. Ever heard the old joke about the man who did that and the first verse he picked was "Judas hung himself" well he didn't like that so he tried it again and the next verse he picked was "And go and do likewise"...that's funny but I know folks like that. Or my most annoying thing is when folks say "well God won't give you more than you can bear" and think that is a scripture...it is NOT!!!!! In that passage of scripture in I Corinthians 10:13 Paul is talking about TEMPTATION! And it really says is that temptation is common to all men and that " God will not allow us to be tempted above that which we can bear but with every temptation He will provide a way of escape." So PLEASE never say that to me to try and "comfort" me....it drives me CRAZY!!!!!!!!! Sorry my soapbox........
So we are trusting and that is not easy right now. Sometimes it is an hourly struggle for me. One hour I can reaffirming my faith, the next I am crying out to God saying "God do you remember me?" I'm not a saint at all. I shrink from learning about Selah's tubes and the care of them. Jon has started learning, and I just can not right now. I do NOT want to learn to do them, everything in me wants my Selah back. But I know I will have to learn how to take care of her. It's not that I don't want to take care of her but I hate the tubes, hate that she has to have all of this. Hate that even with all of this she is having health issues....I'm mad! And I'm not sure of who or what I'm angry with I'm just mad that this little girl who has gone through HELL has to deal with this now. Sometimes I'm glad she seems unaware of things...I hope she doesn't know much of what is going on with her physically right now. I'm drawn to her I want to touch her and hold her and try to as much as I can despite the tubes, so don't think I've turned away from her. It's not that, I just hate what the tubes represent.
This is so hard, if I thought there was a magic formula that would bring her back to us, I'd probably do it. But there is not, there is no where in scripture that gives us a magical formula. In fact one of my dear friends did a huge study on FAITH and in more than 50% of all healings that Jesus did, it was the faith of others NOT the patient that was mentioned . I find that interesting....so I ask you all to pray. Pray for Selah, pray that God will look upon her in mercy and heal her.
All I know is I'm going to trust God and "not foolishly charge God" with things. I think I'm gong to start studying the book of Job. There are many truths in there to learn. Job trusted God and despite what was going on, he didn't foolishly charge God with anything. But he did question God at times.
Our story has become public, and although I will always be honest in my writings, I do want to point anyone who hears or reads our story to Jesus. We're not perfect people. We are in pain and dealing with the hardest thing we have ever dealt with but we can still say God is good. Our circumstances do not change who God is...and His peace has surrounded us throughout this horrible time like a a blanket. My hope for everyone who reads this is that they will experience the peace of God in their hard times like we have.
My husband likes to sing a old song that goes "This peace that I have , the world didn't give it and the world can not take it away" That is so true. Although our hearts are breaking, we still have peace. That is something I can not explain but it is so true!
Please pray for Selah. Her blood pressures remain high and pray that she returns to us!
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