Monday, October 6, 2008

The beginning


I am going to start trying this whole "blog" thing. Not really sure how to do it...so deal. Anyway, I really feel that God has told me lately (last few months) to "Be prepared" or "get ready". Not really sure what He means or what He wants me to do. I do think that it has something to do with preparing for Caroline to be healed. She is now 6 years old and I think that lately He has wanted me to write down all that He has done for us and shown us (supernaturally) in these last 6 years. I am going to attempt to do just that. A little bit at a time I will try to write in some orderly fashion what my faith journey has been like these last years. If this blesses anyone...awesome. It is probably going to be a little jumbled and overwhelming b/c it seems like so much has happened and there is so much to say. I guess today I will start from the beginning.

June 11, 2002 (one day before her actual due date) my water broke at around 6:30 a.m. Shep came home from Bible study and we took off for the hospital. My contractions were steady and sharp...can anyone say epidural!! I was ready. I thought I would get the epidural and then feel really good and wait until someone told me to start pushing. That is what I had seen from my sister-in-law so why shouldn't it happen to me.
Well, I did get my epidural but something went wrong. Turns out, the epidural had somehow gotten into the wrong place ( my vein) and I started massively seizing and then stopped breathing. All of this happening with baby Caroline inside of my womb. They stabilized me as best as they could and did an emergency C-section to get Caroline out...then they put me into a coma so that I would not seize anymore. My poor husband and family were a mess. Can you imagine going from elation to absolute fear and panic? They were told that I may never wake up and they didn't really have a prognosis for Caroline except she was needing help to breathe at first and she did have some seizure activity as well.

I woke up the next day absolutely fine. I had no idea what had happened and every one was treating me like the china doll that could break at any moment. People tried to explain to me what had occurred but I don't think I really grasped the whole reality of it.
I was released from the hospital after one week and my Caroline stayed on for another 12 weeks. She was so beautiful...perfect in every way. Except she couldn't eat at all...and we know that she had suffered from lack of oxygen thus harming her little brain. Looking back these days were spent just waiting and hoping that she would just snap out of it and get better. That, did not happen. In fact we were faced with new issues...placing a g-tube, and dealing with unbelieveable reflux. Caroline would throw up everything she was given. It was awful.
When we finally went home I was scared out of my mind. We had amazing family support and our church and friends were the finest on earth. They had come in and cleaned my home.(we had lived with my parents for the entire summer so we could be close to the hospital) They had also prepared a meal list for us. We were well taken care of and so very loved. But, I knew that all of these people would go home and eventually they would forget about what we now faced. The enormous task of caring for a very handicapped child. I was a depressed mess. Looking back, I know God was graciously carrying me the whole time...and He was allowing me to see myself for what and where I really was. I had been saved at an early age and had loved and lived for Him. But now, when things were hard and so unfair, I blamed Him. I couldn't believe He would actually allow me to have to suffer these things. I even had thoughts of hating Him and thought in some weird way that He was punishing me. Little did I know, He was setting the stage for me to begin my greatest encounters with Him. My desperation drove me to dependency. Everything was out of my hands and I (Shep too) had no other choice than to trust Him alone.

Caroline's first year: 0-12 months

We began speech, occupational, and physical therapy shortly after bringing Caroline home. Because I was new to the "special needs" world, I had no idea that therapists in our home would be a regular part of our new lives. Each therapist would come once a week into our home and work with Caroline for one hour. This was great in some ways and depressing in others. I loved having the support of people that I could talk to and have them explain things to me. In contrast to that... I hated watching week after week the struggle Caroline had of doing the simplest tasks.

Feeding was probably my biggest concern. A mother longs to feed her child...I was no different. However, Caroline did not know how to eat. The combination of breathing, swallowing, tongue placement and all that is involved in taking bites of food were too hard for her. She had terrible reflux and threw up after every feed. Can you imagine how we felt?? Our child could not eat, could not play or manipulate a toy, was very developmentally delayed and she also threw up constantly. I had to take her to the doctor every week for weight checks. This finally resulted in having a procedure done called a fundoplication.

The Lord chose to speak to me one day when I was in tears because I had been trying to feed Caroline some baby food. Caroline had carrots or sweet potatoes all over her face and she was crying too. She was so frustrated because she did not know what to do. I was angry because she couldn't figure it out and I was angry because I wanted her to do it so badly. I began trying to clean her up and settle her down all the while trying to calm myself. Out of nowhere I heard a soft voice say to me "YOU MUST BELIEVE EVEN WHEN YOU DON'T SEE".
It was a strange sensation. I knew that my God was encouraging me. We were already believing Him to heal her and in His sweet way He was telling me not to trust what I was seeing with my natural eyes or what I was feeling with my deceitful heart.

Other issues during her first year:
-She screamed for hours on end in the car...she hated the car seat.
-Her eyes began to cross and we had to visit opthamologists and eventually had to have corrective surgery on that as well.
-Constant appointments with neurologists and gastroenterologists.
-People staring at her anytime we went out and always asking us "Is she sleepy?" ( this was due to the fact that she could not hold her head up so it always looked like she was sleepy)
-We had to feed her with a pump...so anytime we went out with her we had to have the pump attached to the stroller.

-Another issue that we faced was my diagnosis of Rheumatoid Arthritis. Around the time we finally got to bring Caroline home from the hospital, I began to notice some pain and stiffness in my finger. This pain and stiffness rapidly progressed and spread all over until I was no longer able to move easily or do normal daily things such as: driving a car, dressing myself, or doing chores around the house. My doctor referred me to a rheumatologist and I was undoubtedly diagnosed with this chronic disease. The only way I can describe how this feels to someone who may not understand is like this... Normally your body works for you...kind of like your car drives with power steering. It is easy to turn, maneuver, etc...Well, when Rheumatoid takes over your body it is like trying to function with no power steering. Everything that was once very easy is suddenly very difficult. Gripping, walking, opening, running, grabbing, pulling, pushing, lifting...these became extremely difficult and painful. Fortunately, I was able to begin medication that would help with the inflammation and pain. I will tell you that this too was another blow to us during this already difficult time with Caroline. I was usually sapped of energy and strength and the emotional strain was real and intense. It was hard to believe that I was 25 years old and could hardly dress myself... much less take care of a helpless child.
I tell you this just to be very honest about my state of mind during this first year. I was a mess. Depressed and dark come pretty close to describing it. I really felt like all hope was gone. This was my life; I was just going to have to deal with it.

God speaking during Caroline's first year: (0-12 months)

-reading about Faith's story in the NICU and how she was miraculously healed...then God allowing me to meet her face to face
-Jehovah Jireh providing Shep a job exactly when my teaching pay and insurance ended.
-healing service at CFBC...so many attended to pray and annoint my baby. I remember I even took shoes for her to wear (just in case she miraculously walked:>)
-several waitresses at different restaurants would walk up to us and ask to pray with or for Caroline and her healing
-being surrounded by a support group of family and friends who would stand unwavering with us and believe for her healing
-Shep praying with my brother and Cliff at the hospital and feeling very strongly that God wanted us to believe Him for healing for our child


Caroline's 2nd year: (1-2 years old)

Not much has changed at this point. Caroline is getting bigger. She still sees therapists weekly in our home and she still sees several doctors on a frequent basis. The fundoplication has very much helped with the constant puking and reflux. She put some weight on and began looking pretty healthy. Shep and I are still believing for healing and hoping to see signs of it every day.

-Caroline had an MRI done shortly after turning a year old. The results showed a build-up of lactate on her brain. This bothered the neurologist so he referred us to a specialist in this field of neurology. We went to see him and he wanted to do further testing. His testing required spinal fluid, blood, urine, muscle tissue, and a skin sample. He was testing her for a mitochondrial disorder. (This guy is quite literally the preeminent physician in the entire world regarding mitochondrial disorders). A few months later when we met with him again and got the results he told us that he wanted to go into "phase 2" of testing. He would not have to get anything else from her just continue a more detailed study of the specimens that he already had. He felt strongly that Caroline DID have a mitochondrial disorder he just wasn't sure which one. There are hundreds of different types and it was going to take him a year or longer to complete his testing. The mitochondrial disorder that he thought best fit Caroline's symptoms was a disease called "Leigh's disease". This was not a good prognosis. This disorder was degenerative and would most likely end in early death before the age of 13 or so. He also prescribed CoQ10 and various other supplements to aid in her cellular metabolism. These supplements would supposedly help decrease the level of lactate on her brain and hopefully give her more energy.

I remember the weirdest thing happening when we left this visit. We were shell-shocked to say the least. We were not new at this point to receiving bad news. However, this took the cake. It was one thing to know that Caroline had suffered a brain injury at birth and she was severely delayed in development. It was altogether different to lay a terrible diagnosis on top of this already terrible situation. As Shep and I left the parking lot at Scottish Rite Children's Hospital, I remember hearing a still, small voice ask me, "Are you gonna believe me on this or are you gonna believe him?" My heart was breaking and my hopes were waning but despite it all my God was encouraging me through the voice of the Holy Spirit.

We got the supplements and found a pharmacy to get them to us in a form that could be used in her g-tube. We hated it! The liquid CoQ10 supplement was bright orange...it smelled bad and usually got all over everything...plus, Shep and I felt strongly that she did not have a mitochondrial disorder (despite what the doctor said) and we felt a little weird giving her this supplement that probably was not helping her anyway. So we did something that we would not have normally done. We took her off of the supplements the Dr. prescribed to us without telling anyone. We didn't tell our family, friends, and certainly not the doctors.

God Speaking during her 2nd year: (1-2 years old)

-Dana had a vision of me and Caroline (in a white dress) on a stage. In the vision Caroline is perfectly whole.
-"Living Proof" event in Mobile, AL where mom and I met Joanne Skelton. She spoke a prophetic word about Caroline and said that the Holy Spirit confirmed in her spirit that indeed Caroline would be healed.
-At the National Women's Conv. God gave me a word through Beth. She said, "If God has told you that He was going to do something...stop asking Him and start believing Him and standing on what He has told you. Also on the ride home I asked God to encourage Shep and to tell us when He might heal Caroline.
-The next day Shep received a prophetic word from a lady he had just met. Her name is Melissa.  She felt that God spoke to her about Caroline. She told Shep that Caroline would begin to catch up with children and start doing the things that normal children do.  She even felt like she saw a vision of what she would look like. She looked to be around the age of 5 or so. She also said that there might be some type of experiemental medicine involved as well, but she wasn't sure.

Caroine's 3rd year (2-3 years old)

This year began with Shep and I feeling the move of God on our hearts to get pregnant again. We found ourselves very nervous about pregnancy, however, as we waited for Caroline's genetic test results . We were told in no uncertain terms that because Caroline most likely had a genetic disorder we should not have more children. God, on the other hand, was telling us otherwise.

Caroline had her annual MRI when she turned 2 years old to continue to monitor the lactate on her brain. We would not receive the results of this MRI for some time. Meanwhile, we were praying heavily about getting pregnant. I will never forget one night sitting in bed and working on my Bible study. I was doing "Believing God" at the time and this particular lesson was studying Joshua and the walls of Jericho. God had told Joshua that the city of Jericho was already his...however, He still had to go take possession of it. My mind immediately went to our situation with Caroline's healing and having another baby. What I heard in my spirit was this, "If I am going to heal Caroline, then you don't need to worry about a genetic disorder. Get pregnant...take possession of that...it is already yours...I have told you that I will do this." The next day I spoke with our friend Melissa who had prophesied about Caroline. I asked her to pray for us concerning getting pregnant again. She told me to study two different passages of scripture. One of the passages she told me to study was Joshua and the walls of Jericho. I thought I would drop the phone. I could not believe that God had spoken so directly to me through my Bible study and then again through a person. It was unreal!!

Shep and I got to slip away and go on a vacation and after much prayer and wise counsel, we decided to start trying again to get pregnant. People in our families were somewhat excited but still guarded because of what the genetic doctors had told us. Two months later I found out the glorious news that I was pregnant. Major sickness followed...plus we had decided to put our house on the market. Thankfully God sent buyers to us rather quickly and we sold the house within 3 months time. That was perfect because we had begun building a home in a subdivision across the county and we were set to move in the day after Christmas.
In October (I was 3+ months pregnant at this point) we received a call from Caroline's neurologist with the results from her latest MRI. Shep and I were each holding one of our cordless phones and listening intently to what the doctor told us. He said that the latest MRI showed no signs of lactate whatsoever. It was all gone. We were stunned! The doctor told us to continue giving Caroline the CoQ10 supplement because the MRI proved that either a) the prescriptions were working or b) she did not have the mitochondrial disorder. This was when it got really exciting. Shep then told the doctor that we had not given Caroline any of the supplements for the last 6 months. The doctor then told us (with much less excitement than we felt appropriate) that Caroline must not have a mitochondrial disorder. Shep and I were ecstatic! This meant that God had removed the lactate and results would later confirm that Caroline did not have this genetic mitochondrial disorder. On top of that, we had been obedient to step out on faith and get pregnant without waiting for any results to provide a safety net. God came through BIG TIME. We were calling everyone and praising God for the good thing He had done.
We moved to our new home in the days following Christmas. I was around 7 months pregnant. It was a special time. Shep and I were excitedly anticipating the arrival of our new baby girl. We did have one concern though- Delivery. Shep did not want me getting another epidural because of what went terribly wrong. I had to have a c-section...so we were looking at a few options...general anethesia, spinal-tap, or epidural (Shep had already said no!). We met with the anethesiologists at our hospital...due to our past experience, they told us the best option would be a spinal tap. Unknown to me, Shep still needed more confirmation on this. He prayed and specifically asked God to have someone tell him what to do. That next day, I was on the phone talking to our friend Melissa. ( This is the same friend who had prophesied to Shep and to me about Joshua and the walls of Jericho) We were doing some small talk. I mentioned to her to pray for us and confirmation that we were doing the right thing regarding anethesia during my delivery. I told her that Shep was still really restless about our decision. She began to speak to me in a way that I had never heard anyone speak before. She said, "The Lord says, ...this delivery will be perfect, the spinal tap is the correct choice. There will be angels posted at your doors to protect you and guide the doctors. All will be completely calm and peaceful and what we lost at Caroline's birth will be restored at this birth."
It was awesome. Her words carried such power and authority. I knew in my spirit that God, the great I AM had spoken to me through this sweet friend. I was crying and my knees literally felt weak. I don't know when I have ever felt the presence on God so strongly. I told Shep about my conversation and he knew that God had answered his prayer for confirmation as well. The truth is--we had a choice of whether to believe that God was talking or not. We chose to believe and He proved his faithfulness.
Ava Ruth was born on March 17, 2005. It was perfect. The entire delivery was calm and peaceful. God had fulfilled his promise.

God speaking during Caroline's 3rd year:
-using the Bible study "Believing God" to speak to me repeatedly and confirm His promise of healing Caroline
-speaking to us through Melissa regarding getting pregnant and Ava's delivery (Joshua and the walls of Jericho)
-hundreds of ladies praying for Caroline's healing at the CFBC women's conference (several friends felt very led for me to bring Caroline to this conference and wrap her in a Jewish tallit, which is a prayer shawl worn by Jewish teachers) The topic of this conference was "Touching the hem of His garment"...we didn't want to just touch it...we wanted her completely wrapped in it.
Caroline's past few years: (3-6 years old)
Caroline's life has pretty much been the same these last few years. We have not seen any significant gains at all. She has been in the local school system since the age of three. It has been wonderful for her and for us. She has been exposed to all kinds of people and challenged in ways that we never could have given her from home. Her teachers and therapists have been amazing. These people are called to do what they do. They love these kids and want so badly to see them make progess.
Our home life has changed somewhat. Ava was born when Caroline was about to turn three years old. Then we added another sweetheart to the family...our baby boy, Zeke. Caroline was about to turn six when he was born.
I decided to compress these last few years simply because not much has changed regarding Caroline. Each day has given us the choice to believe what God has told us and move forward or live in defeat and dispair and listen to our enemy. I am embarassed to say that some days I have chosen the latter. But, to God's glory, I am learning to choose wisely more often. We get up everyday and repeat what we did the day before. Lift her out of bed, lay her on the floor, change her diaper, feed her with a feeding tube, dress her, load her into the car, take her to school, worry over her, pray for her, pick her up from school, wipe drool from her face, feed her again with the feeding tube, change her diaper again, dress her for bed...on and on it goes...all the while looking at her and choosing to believe that God is going to HEAL her. I wanted to go into the detail of our caring for her because this "faith" thing isn't easy at all. God has demanded that we stare at our impossibility every single day...all the while declaring in our hearts that NOTHING IS IMPOSSIBLE!
God speaking these past few years: (3-6 years old)
-Brandi's dreams of Caroline's healing
-Jason's dream of Caroline's healing
-Deana's dreams of Caroline's healing
-Laura's dream of Caroline's healing
-mom's dreams of Caroline's healing
-daddy's dreams of Caroline's healing
-granny's dreams of Caroline's healing
-uncle david's dreams of Caroline's healing
-Michael's dream of Caroline's healing
-Tamara's dream of Caroline's healing
-Kay's dreams of Caroline's healing
-my dreams of Caroline's healing
-Shep's dreams of Caroline's healing
-Mandi's dreams of Caroline's healing
-Mande's dreams of Caroline's healing
-Ansley's dream of Caroline's healing
-LeAnne's dream of Caroline's healing
-Leigh Anne's dream of Caroline's healing
I feel like there are so many others that I have left out and will probably have to come back and add as I remember. But, how cool is that!! God, is His sweetness, has allowed Shep and I to be so encouraged by the dreams of others and He has given so many others ownership into this process. They have gotten a taste of what is yet to come...
-Deana and Kim's visions of Caroline healed...
-Shep and I asking God to show us examples of modern day miracles. We were losing hope and felt so discouraged so we asked Him to let us see the lame walk, the blind see, the dead raised again. That very week God brought someone across Shep's path that ended up giving him a dvd of the 700 club. We watched it and couldn't believe our eyes. There were 12 modern day miracles...and one of them was the very miracle we desperately needed to see. A girl healed of Cerebral Palsy.
-Paul's visions of Caroline healed...
-Marje (my 85 year old, full-of-faith mentor) feeling very strongly that she needed to pray over Caroline every single week at church. She felt she was supposed to touch her with her left hand and raise her right hand and pray over her. She has done this now every Sunday for the last 2 years at church. It has been and continues to be such an encouragement to me and to those who see her doing it each week.
-Jason, Brandi, Derrick, and D buying the bicycle for Caroline for Christmas. They felt that they should encourage us by buying a gift for her that she couldn't possibly use without the resurrecting power of Jesus. They were "preparing for rain".
-Derrick, Shep, and Jason going away for a 24 hour fast to pray for our little girl.
-Shep and I praying for 40 days and specifically asking God to speak to us in a clear and direct way about Caroline...if there was something we were supposed to be doing???
During this 40 days of prayer two different friends bring "cord-blood/stem-cell" therapy to our attention. They saw a clip on t.v. of a child with C.P. who had made remarkable improvements with his own cord blood transfusions. They thought that this might be something that we could do for Caroline...we had not saved her cord blood, but I was pregnant with Zeke. We have this checked out but because we did not save Caroline's own cord blood, she cannot qualify for this type of treatment. We were later directed to a doctor in San Diego, CA that does experiemental stem-cell treatment in Mexico. It was at this time that we recalled the earlier prophecy that Caroline's healing may be linked to experimental medical treatment. We were convinced that we needed to go forward with the treatment but did not know how in the world we would ever be able to pay for it. Nonetheless, we went ahead and scheduled the procedure feeling confident that God would provide the means. Provide HE did!! Two anonymous donors contributed enough money to pay for first class airfare, lodging, stem-cell treatment, and all attendant costs without any solicitation from us whatsoever.
Since the stem-cell treatment, Caroline's therapists have all noticed marked improvement in her. She has an increased desire to engage in basic activities such as eating, talking, and walking that she never seemed to have before. Additionally, she has shown significant strides in manipulating objects with her hands and an increase in her energy level.
We feel that we have done what God asked us to do. Now we wait and watch for what HE is going to do!!

6 comments:

Tess said...

I'm Loving it sister!

Sharon said...

I'm believing and marching with you! Our Jehovah-Ropheka is faithful!

marje said...

good that you are sharing your journal......our faith grows and God is glorified.

Anonymous said...

love you Demps! thanks for sharing!! emh

Anonymous said...

Thank you so much for sharing your story! You have no idea how God has touched me through your story. Your faith is amazing! I will pray for God's perfect Will to be done for you and your family. He will always give you the grace and the strength to continue to trust Him even when the enemy tempts you to believe that your struggles will never end.

melissa said...

Andrea the websight is AWESOME!! I am so encouraged.Do you realize how much both your and Shep's faith has grown thru all of this?I am so thankful we serve a faithful God-who is the same yesterday,today ,and tomorrow.Jesus said "this too shall pass"-he did NOT say"this too shall stay".Be encouraged that your miracle will come-God will do what he said he will do!I love you and your precious family-Melissa