Georgia Lily

Georgia Lily
My Love Bug

Wednesday, March 21, 2012

A Blessing Named Conerly

 Such a good baby brother...
 Mr. Helpful
 Mommy's Loves

  I would like to take this post and dedicate it to my beautiful, sweet, funny, little man, Conerly Aidan. Sean and I did think that we wanted any more children especially after all we have had to endure with Georgia's illness but I am so glad that God is good and knew that we needed Conerly.

   I really needed my little man to help me, more than I realized. I feel for the first time what it is like to have a "baby". I mean he gets into everything, crawls away from me, he tears things up, and gives the sweetest kisses, comes over to me to hold him, looks at me when I have to discipline him and comes to me for forgiveness. Georgia has never really done any of these things. I know she will in the future but for the time I'm so glad that I have Conerly.

   I thank God who knows how to give good gifts and they come at exactly the right time. It may be hard to have two children but at the same time so rewarding.

Monday, March 19, 2012

A Beautifully Orchestrated Plan

   Has there ever been any doubt that we serve a HUGE God? After we left the hospital, we felt a little bit deflated but being the parents that we are, persistant and unwavering when it comes to our Love Bug, we are going to another new doctor this time in Orlando. Now before you ask Why? You have been to several doctors already and they all have said the same thing, nothing to be done. Well, just before we went to Jacksonville, one of the pediatricians that Sean used to work for, called him and told him about this new state of the art program down in Orlando. Sean started reading about the doctor there and the program and he was amazed. I have to say that I did not want to get my hopes up at all, especially after all that we have been through, but after we left the hospial I started doing my own reading. Pretty spectatular! Now, I am not for putting all my eggs into one basket and that is what I was telling Sean, but then out of the blue, my mom came across a lady who is currently at this hospital with her daughter.

   What are the odds? Pretty slim to none...this lady, Anneliese has a seven year old girl who has had seizures since she was three months old and she has several types of seizures and she has seizures from all over her brain, just like Georgia.  Even more crazy is we have seen several of the same doctors including the last one, where he told her just like us, there was nothing to be done and just love on her because she is never going to recover. He told her this when her daughter was one, can you believe that? Holding your precious one-year-old and told, "nope, we cannot do anything, just love as best you can." Only God knows, and I pray that this "doctor" is soon brought to his knees or he gets put out of business of "treating" patients. To put things into perspective, Anneliese has been to three countries and has had her daughter on 11 medicines. This little girl has learned to walk 4 times in her life. Can you imagine? Her little girl has progressed then regressed over and over again. I can certainly imagine, I have been living this for the last three years. Not the severity of this but I can totally relate. It also makes me realize how fortunate that I am for all that Georgia does. Georgia has never had it as bad as this other little girl.

   Now, we have not been scheduled for an appointment yet but we have talked to them and as soon as they receive Georgia's records they are going to schedule us. When I had them on the phone last week, I asked them if there was a long waiting period and to my amazement there is not, the receptionist told me that they would have us in the same week or the week after. Apparently, these doctors only see a few patients, Anneliese told me that the first time she went there the doctor sat with her for two hours and they only schedule three patients a day for this very reason. Her daughter underwent her first brain surgery in October of last year and just last week they went in and took out the bad part of the brain. Anneliese was told that her daugter was not a surgical candidate because the seizures had no beginning and no ending. I am amazed after hearing this. We have been told the same thing. These doctors care about these children and want to see them get better. This is not one of those "take a number and have a seat" kind of places. Praise God!

   "I will go before you and make the crooked places straight." Isaiah 45:2 This is just what we have been praying for, that God would send us to the right doctor and here we are. We are about to start down this path, I know for a good purpose. Because when God orchestrates things, only beautiful things come.

  I am attaching two links, the first one is the link to Anneliese and her daughter's story, the second link is the program that we hope to be getting Georgia into.

http://www.caringbridge.org/visit/christinaclark1

http://www.floridahospitalforchildren.com/medical-team/directors/dr-ki-lee

"God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will also make the way of escape, that you may be able to bear it." 1 Corinthians 10:13

And finally, one of my favorite verses, "My brethren, count it all joy when you fall into various trials, knowing that the testing of your faith produces patience." James 1:2-3

Keep Praying

   Last Wednesday at church the pastor was talking about praying, and praying about something more than once, he said he heard someone say that we could pray for something 100 times and the first 99 times would be in doubt, well, he said no! that is not true, we are to continually pray until our needs are met. Even if we pray for something 100 times. Then my sister sang a pretty song about keep praying. I know that God is talking to me. I am pretty positive I passed the 100 prayers mark years ago but you know what?, I am going to continue to pray. In the Bible Jesus gives his disciples a parable about a persistant widow, "Then He spoke a parable to them, that men always ought to pray and not lose heart, saying; "There was in a certain city a judge who did not fear God nor regard man. Now there was a widow in that city; and she came to him saying, "Get justice for me from my adversary. And he would not for a while; but afterward he said within himself 'Though I do not fear God nor regard man, yet because this widow troubles me I will avenge her, lest by her continual coming she weary me.'" Then the Lord said, "Hear what the unjust judge said. And shall God not avenge His own who cry out day and night to Him, though He bears long with them? I tell you that He will avenge them speedily. Nevertheless, when the Son of Man comes, will He really find faith on the earth?" Luke 18:1-8

   The Lord has started a good work in Georgia and I know that He will be faithful to continue to work through her until He has completed this work, "Being confident of this very thing, that He who has begun a good work in you will complete it until the day of Jesus Christ." Philippians 1:6 As I have previously said, my whole attitude has changed and I am not down anymore, I am more happy than I have been since we found out about her diagnosis. I have given it all the Lord and He is working through me. I have to say that Georgia has saved my life and my soul, it's very easy to skate through life when no trials abound but when God puts you through the fire you have to decide whether you are going to let this bring you down or are you going to rise above it. I will rise above it! I used to feel sorry for myself and question God but now I understand better what He is doing. He is using this child to bring about great things and for His wonderful purpose. Will I ever be able to thank Him for the seizures, I do not believe so but can I thank Him for bringing Georgia into my life. I can also thank Him for humbling me and bringing me to this place in my faith that I could never have gotten had it not been for my precious baby. So with that being said, thank you Lord!

Happy!

   Happiness is waking up to a pretty girl who is giggling and squealing and ready for the day to begin. Happiness is seeing my little girl running in the yard and feeling the grass in her fingertips. Happiness is being free from bondage that has held me captive for the last three years! I cannot express the happiness that I feel in my heart, knowing that I serve a big God and a healing God and a God that will see me through not matter what happens.

   Last week we had to admit Georgia to the hospital for a video EEG. We were supposed to be there for an MRI too but ended up checking ourselves out because we came to realize we were in the wrong place seeing the wrong doctor for our precious daughter. You see, the doctor showed us the EEG and basically told us there is nothing that can be done for our little Love Bug and that she would seize her whole life and we needed to accept that she would never lead a normal life. The doctor was not compassionate at all, I was a little on the hurt side and even asked him, "So you are basically saying that my daughter is going to seize into oblivian and then just die?" To which he said, "Yea." Like I was just asking if the sky was blue. Complete and utter coldness! That is what made us want to flee from that hospital as fast as they could get us out of there.

   After the doctor left the room I burst into tears, I mean can you imagine being in a situation where a doctor, someone who is supposed to help others, just tells you, nope there is nothing that can be done and you just need to let nature take its course. One word, heartbreaking! Later that afternoon after the initial shock wore off I came to realize that I did see a miracle, Georgia's EEG showed that her brain is absolutely chaotic around the clock, it is a miracle that she can do all that she can do. Even in her sleep her brain is misfiring.

   I know that God is at work because I could not have heard that news three years ago and be singing God's praises the next day. I was telling Sean last night that I feel so happy like my heart is just going to burst, I told him I feel as happy as when we found out that we were expecting Georgia. To which he said, well we are expecting...expecting a miracle. I know that God is going to do something even if all He does is take her seizures, I can handle raising a child that may not ever grow in maturity. All I know is that I am doing all that I can do and I will not stop taking her to different doctors til I find one that completely satisfies the needs of my daughter and will not simply give up on my child because she is a complicated case.

Being happy doesn't mean that everything is perfect. It means that you've decided to look beyond the imperfections.Annonymous

Thursday, March 1, 2012

Small Glimpes

   Recently, I was watching the 700 Club, and if you are unfamiliar with this show it is a talk show centered around God and faith. Amazing show if you ever get the chance to watch it. Anyway, Kim and Krickitt (the couple that the movie The Vow is based on) were guests on the show and Kim said something that really stood out to me, "God gave me glimpes of His hands working in our lives" (Of course I'm paraphrasing here). Well, just like that man said, God gives me glimpes of things when I have reached the end of my rope and feel there is nothing worth holding on to. Georgia will do something completely unexpected and I believe that is God showing me that He is still in control and He is still working through her and through us as a family.

   Last night I was reading in the book of Genesis and stumbled over this verse, "The-Lord-Will-Provide; as it is said to this day, "In the Mount of the Lord it shall be provided."" Genesis 22:14. This goes back to when God was testing Abraham's faithfulness to the Lord. Now I believe in my heart that the Lord is testing my faithfulness to Him, just as He tested Abraham. At church, we were called to the front of the church and all the members prayed for our family and they are standing with us and proclaiming that Georgia will be healed and because of this trial we are going to be able to help others going through similar trials. But we have to believe and have the faith that God is going to do what He said He is going to do.

   I do a lot of research on the internet about people with epilepsy and cortical dysplasia. A couple of weeks ago I found this discussion forum where people were discussing seizures and how their life is hard and how many of them "hate" their lives and what the seizures do to them. Like a moth to the light I begin reading and cannot stop myself. Sean gets so upset with me for reading things like this but like an addiction I am unable to stop myself. Many of these people are unable to drive or lead "normal" lives because they never know when a seizure is going to hit. They talked a lot about how a seizure feels, their bodies ache afterward, they have terrrible headaches, and they are exhausted both physically and mentally. Wow! I begin to think to myself how does Georgia feel? Is she in a constant state of pain because unlike some of the people I was reading about, Georgia has seizures everyday, sometimes every hour, whereas these people might have one episode a month or every several months. I was telling this to my sister-in-law, Ashley, and she said something very profound to me, "No, Georgia does not feel this way because Jesus is holding in the midst of the seizure." One blessing to me is that Georgia has had seizures for so long she probably does not even remember her life pre-seizures so she really has nothing to compare it to.

 Fog Lifted
   Sean and I believe that the day is coming for Georgia when the fog will be lifted and she will shake her head and she will look at us and say, "Mommy, Daddy, why are you so sad, I'm okay." Now of course, if it does not happen exactly like that, but we like to talk out various scenarios about how God will bring about this miracle of creative healing. We believe we are one day closer to her being healed. God will say enough and it will be done! Praise God!

"Eye has not seen, nor ear heard,
Nor have entered in the heart of man
The things which God has prepared
For those who Love Him."
1 Corinthians 2:9