Just some thoughts I wanted to share before Abe's surgery tomorrow. I am not writing this email searching for answers and I almost didn't share it. However it needs to be written for someone. For me. I need the words on paper so that when we are past this I can look back and see how far we have come. I need these words written so that when some mom gets to that phase or season of her life and she turns to that chapter in my book these words will give her hope, peace or a reassurance that someone else has felt the same way she is feeling.
First off thanks so much for the concern for me today with my ultrasound. Everything was clear!!! WOOHOO!!! God is good. I am so glad to have that behind me going into tomorrow.
Today has been terribly hard. I am worn out from battling satan cause he came at me from all angles today. First off I am dealing with being mad that any of this even has to be done. I told Mike that I know what I am supposed feel. I know what I believe. I know the scriptures. I know that God is carrying me through this. Yes I know all that. Still that doesn't take away the anger of the real fact that I HATE putting my baby through this.
That being said I love and I am so very thankful that we are so very blessed to have a wonderful children's hospital so near by where Mike can take us, be with us and then still come home at night and be with our girls. I am thankful that we have family and friends to turn to to help us during this time.
Each time today I felt as though I had hit a wall the phone rang, I got an email or a message, Mike walked in with a cherry limeade, and a dear friend sent a sweet uplifting card with money for breakfast in it. Each time satan stood tall God used someone in a big way to knock him down.
I am also thankful for the inventor of the VNS to give us hope that Abe and Michala will get some relief from their seizures. I am thankful for an amazing neurosurgeon who I feel at peace with leaving my child's life in. I am thankful for a brilliant metabolic specialist that is going to take care in using Abe's muscle and skin to come up with a diagnosis.
I am excited and sad all in one that in 6-8 weeks we will possibly have a diagnosis. I am scared of that diagnosis. I am scared of where it will take us. However I am looking forward to it so that we can move on and possibly open the door to new options for Abe. I am scare that we may not get a diagnosis. We may come up empty handy. Mad because all this has to be done.
Bags are packed and everyone is ready for tomorrow. So please keep everyone in your prayers. Hopefully we will be back home and everyone back together again on Wednesday. Thanks for keeping us in your prayers!!!
With love & much thanks!!!
Monday, June 29, 2009
It's me again!
right and God sending one of His angels my way.
This morning when I went to the doctor mom came and stayed with everybody. She doesn't do that much any more so Mike called to check on her. He asked Marlee Anne how granmama was doing and she said she looks like she was just dumped. Mike said what? Marlee Anne said she looks like her boyfriend just broke up with her. When Mike told me he was laughing so hard. OH MY WORD that girl. We were all in tears laughing about it.
Tonight Marlee Anne was packing a bag for Abe & I to take to the hospital. She does this everytime someone goes to the hospital. She handed me the bag and said mom look inside. When I did I saw money she had put in there. She said mom I wanted to make sure you had money to get something to drink if you wanted it. PRECIOUS! PRECIOUS!!! She had put her birthday money in the bag so that I would have money while I was at the hospital. That girl and her heart.
She is laying with Abe right now, praying for him. I love to hear her when she doesn't know I am listening. Please say a special prayer for her as she is a big girl while we are gone. She asked me a little while ago how long I thought we would have to be gone. She has hugged me at least a thousand times, told me she would miss us and that she loves me. God IS good!
OK I have put it off long enough. It's time to move forward to tomorrow. Thank you so much for the emails! It's amazing to send out an email and then just minutes later have responses filled with encouragement, laughs and prayers!
This morning when I went to the doctor mom came and stayed with everybody. She doesn't do that much any more so Mike called to check on her. He asked Marlee Anne how granmama was doing and she said she looks like she was just dumped. Mike said what? Marlee Anne said she looks like her boyfriend just broke up with her. When Mike told me he was laughing so hard. OH MY WORD that girl. We were all in tears laughing about it.
Tonight Marlee Anne was packing a bag for Abe & I to take to the hospital. She does this everytime someone goes to the hospital. She handed me the bag and said mom look inside. When I did I saw money she had put in there. She said mom I wanted to make sure you had money to get something to drink if you wanted it. PRECIOUS! PRECIOUS!!! She had put her birthday money in the bag so that I would have money while I was at the hospital. That girl and her heart.
She is laying with Abe right now, praying for him. I love to hear her when she doesn't know I am listening. Please say a special prayer for her as she is a big girl while we are gone. She asked me a little while ago how long I thought we would have to be gone. She has hugged me at least a thousand times, told me she would miss us and that she loves me. God IS good!
OK I have put it off long enough. It's time to move forward to tomorrow. Thank you so much for the emails! It's amazing to send out an email and then just minutes later have responses filled with encouragement, laughs and prayers!
Thursday, June 25, 2009
Karland Jo Curtis is here!
My sweet and beautiful precious great neice has made her arrival. Thanks so much for all your prayers! Karland made her arrival at 12:41 on June 25, 2009. She and mom are doing great. Kale is one of the proudest daddy's I have ever seen. Karland weighs 7lbs 1 oz and is 19".
Wednesday, June 24, 2009
Update on me!
OK since most of the county knows about my mishap thanks to Mike & Lisa I thought I better update everyone. Last night our dear friends Randy and Lisa brought supper over to us and spent the evening with us. What a blessing to just sit and enjoy time together!
Everything was going great. Michala had her one on one time with Lisa. We ate a wonderful meal. Mike, Randy & Marlee Anne hit golf balls. Then they played Wii golf. Mary Elizabeth was laughing and enjoying the night. Abe pooped and Lisa gave him to me to change. OK she is back to snuggling with him again. Now the scene is set.
I go get everyone's meds and oatmeal. Get Michala fed and go back to the kitchen. I have all Mary Elizabeth's stuff together and go to the laundry room to get a towel. The last thing I remember is opening the cabinet door. The next thing I remember is Mike on the floor with me. The trim had come off the cabinet and hit me in the head. Thankful no blood but I still have the dent in my head and a horrible headache and earache.
Everyone starts scurrying to help me. Marlee Anne is concerned I need to go to the ER. They finally get me to the couch with a bag of frozen blueberries on my head, a wet rag on my face, sprite and pain meds. It was a very long night but finally the dizziness is going away. Nothing like a new baby in the family to make you start feeling better.
Well Lisa thought it was a great idea to put one wet rag in the freezer so that when the other one gets warm I will have a cold one. Marlee Anne goes to give me one out of the freezer and it's frozen solid and she about knocks me out with it. Not meaning to of course.
This morning I finally make it to the bathroom on my own, look in the mirror and gasp at the sight of something purple all over my shirt. Then I kinda remember the bag of blueberries busting and Marlee Anne putting them in a ziploc bag.
What can I say! Never a dull moment. Thankful that Randy & Lisa were here to help out while all this was going on during night time med stuff. Thanks so much to ya'll that have already been praying for me about this! I am sure the dent will go away along with the headache and earache soon. Sorry no pictures to share! It's ok to laugh!!!
Everything was going great. Michala had her one on one time with Lisa. We ate a wonderful meal. Mike, Randy & Marlee Anne hit golf balls. Then they played Wii golf. Mary Elizabeth was laughing and enjoying the night. Abe pooped and Lisa gave him to me to change. OK she is back to snuggling with him again. Now the scene is set.
I go get everyone's meds and oatmeal. Get Michala fed and go back to the kitchen. I have all Mary Elizabeth's stuff together and go to the laundry room to get a towel. The last thing I remember is opening the cabinet door. The next thing I remember is Mike on the floor with me. The trim had come off the cabinet and hit me in the head. Thankful no blood but I still have the dent in my head and a horrible headache and earache.
Everyone starts scurrying to help me. Marlee Anne is concerned I need to go to the ER. They finally get me to the couch with a bag of frozen blueberries on my head, a wet rag on my face, sprite and pain meds. It was a very long night but finally the dizziness is going away. Nothing like a new baby in the family to make you start feeling better.
Well Lisa thought it was a great idea to put one wet rag in the freezer so that when the other one gets warm I will have a cold one. Marlee Anne goes to give me one out of the freezer and it's frozen solid and she about knocks me out with it. Not meaning to of course.
This morning I finally make it to the bathroom on my own, look in the mirror and gasp at the sight of something purple all over my shirt. Then I kinda remember the bag of blueberries busting and Marlee Anne putting them in a ziploc bag.
What can I say! Never a dull moment. Thankful that Randy & Lisa were here to help out while all this was going on during night time med stuff. Thanks so much to ya'll that have already been praying for me about this! I am sure the dent will go away along with the headache and earache soon. Sorry no pictures to share! It's ok to laugh!!!
Monday, June 22, 2009
Michala's surgery
Michala's surgery has been scheduled for July 22nd. Right now I do not have a peace about it. I have some unanswered questions that I am hoping to get answered today. Please pray that if it's the right thing to do as far as the right surgeon that I will have a peace about it. I think I am allowing myself to get a little no a lot overwhelmed with two of my babies having surgery so close together. Thanks so much for your prayers!!!
Abe's appt
Abe's appt went WONDERFUL!!! Thank you so much for all the prayers!!! The neurosurgeon we love! He was very thorough and very knowledgeable. Took time to answer all our questions which weren't many because he covered almost everything while he was telling us about the surgeries. He will be doing the VNS, lumbar puncture, muscle biopsy and skin biopsy. They will be getting blood and urine samples also while he is asleep. The surgery will take about 3 hours and they will keep him over night so that they know his pain is being managed well along with his oxygen. His office staff was very helpful, and friendly while still being very organized and professional. We left there with the peace we needed about the surgery. His surgery is scheduled for Tuesday June 30th at 7:30AM. Everything with Dr. Shoffner's office is falling into place too. Thanks again for the prayers!!!
weekend
This weekend we celebrated Mike's mom and dad's 50th wedding anniversary. What an amazing thing in this day and age. We had a wonderful time with the family. I am very thankful that we have such a loving Christian couple to influence our lives. They are so very special to all of us.
Today was a very hard day for me. I HATE Father's Day so very bad. I miss my daddy even more on this day. I would like to sleep through. However my children are very blessed to have an amazing daddy that loves them very much. Marlee Anne fixed him brunch in bed. Michala and Abe had a day filled with seizures so it wasn't pleasant for anyone. We are so very ready for their VNS surgeries. Hopefully they will get scheduled soon.
Tomorrow we meet with Abe's neurosugeon. Please pray for safe travels and a good report.
Hope that all the fathers whether your children have hair or fur had a wonderful Father's Day.
Today was a very hard day for me. I HATE Father's Day so very bad. I miss my daddy even more on this day. I would like to sleep through. However my children are very blessed to have an amazing daddy that loves them very much. Marlee Anne fixed him brunch in bed. Michala and Abe had a day filled with seizures so it wasn't pleasant for anyone. We are so very ready for their VNS surgeries. Hopefully they will get scheduled soon.
Tomorrow we meet with Abe's neurosugeon. Please pray for safe travels and a good report.
Hope that all the fathers whether your children have hair or fur had a wonderful Father's Day.
Sunday, June 21, 2009
Prayer request
Ya'll no matter whether you are for the war or against it these men and women who are fighting for OUR freedom need our prayers.
One of our prayer warriors, Bonnie Gunter's son Ray is in the Air Force and is in Afghanistan. The Taliban hit his base with mortars. Two were killed(Ray knew one of them) and 6 were wounded.
Another one of our prayer warriors & dear friend of mine, Becky Byrum's son Scotty leaves with his squadron from Seattle Washington on Sunday for his deployment also.
Please lift up all our men and women but specifically the families of these two that were killed, along with the 6 that were wounded. Please remember Ray and Scotty also!
Thanks so much for joining us in prayer on this!
One of our prayer warriors, Bonnie Gunter's son Ray is in the Air Force and is in Afghanistan. The Taliban hit his base with mortars. Two were killed(Ray knew one of them) and 6 were wounded.
Another one of our prayer warriors & dear friend of mine, Becky Byrum's son Scotty leaves with his squadron from Seattle Washington on Sunday for his deployment also.
Please lift up all our men and women but specifically the families of these two that were killed, along with the 6 that were wounded. Please remember Ray and Scotty also!
Thanks so much for joining us in prayer on this!
Tuesday, June 16, 2009
Abe's appt
Most days I go through life looking at everything as if it's a gift. I thank God for each one of them. Some days, thankfully rare, I am hit with WHY ME? Not so much that I am too good for all this to be happening to ME but it's hard to watch my children suffer. It's hard struggling and searching to find answers to something that will help. This afternoon as I was having my meltdown after we got back from the morning appts Mike walks over and just holds me. Then he sits with me and listens to every sob, every cry, every scream and every longing. He doesn't try to solve it. He doesn't tell me it will go away. Instead he says, well you know God gives special children to special people. We both dislike that saying so very much because we both know that we are no more special than any of God's other children. So of course I bust out laughing. Then he goes on to share his feelings. Surprisingly enough they are many of the same feelings I am having at the moment. Man is it nice to know I am not in this alone with these feelings. He said you know it's like running a never ending marathon. He is so right. Sometimes you have to stop, grab some nourishment and keep on running. Sometimes we have to stop and refuel, regroup and get back in the game, back in the pack and keep running. I always think just keep swimming.
Today when we met with Dr. Shoffner I was taken back 16 years ago when we started on this journey with Mary Elizabeth. She was 9 months old. It was long and hard. It hit me like a ton of bricks and I wasn't ready for it. I thought I was prepared. I mentally put on my bulldog skirt to help me feel strong. I took a deep breath and tried to take in all the words, all the information. I don't do well with "what ifs" and right now that's where we are and where we have to be until more test and more results start coming in. I was thankful that the technology is leaps and bounds ahead of where it was 16 years ago. All of this means more testing for Abe. Along with his muscle biopsy and lumbar puncture they will do a skin biopsy, blood and urine test. Two more things I think that I am forgetting. We may even find out more about Mary Elizabeth's diagnosis now if we can track down her muscle tissue and if it was processed and frozen correctly.
We couldn't ask for Dr. Shoffner and his assistant Camille to be more helpful or more wonderful. He is a brilliant man and he took so much time to explain it almost in words I could understand. Camille has been there to walk me through so much of this and will be with us as we coordinate all the things for surgery.
Abe did really well for his RMR test. The results should be back in a few days. I am attaching a couple of pictures of him during the test. I was thankful that I got to hold him through it. It really stressed him and we are having a hard time getting his seizures stopped.
The most wonderful part of my day was a delicious breakfast at Mimi's Cafe with my two favorite boys. I tell ya'll what, I am a stress eater and I am surprised I don't weigh 200 lbs. It was a wonderful meal though. The restaurant reminded me of Tony's at Magic Kingdom. The food was unlike any other. Lots of neat and different things on the menu. A nice time to regroup in between appts.
It's about time for Abe to have some more rescue meds so I better run. Thank you so much for your prayers! Thanks everyone for the uplifting messages that I received throughout the morning. What a way to get us through! We even received some info on a tandem wheelchair. Woohoo!!! We will be checking into on Friday when the wheelchair rep comes.
Thanks again for all the prayers. In case I don't get to update again before Thursday please pray for Michala's appt with the surgeon.
Today when we met with Dr. Shoffner I was taken back 16 years ago when we started on this journey with Mary Elizabeth. She was 9 months old. It was long and hard. It hit me like a ton of bricks and I wasn't ready for it. I thought I was prepared. I mentally put on my bulldog skirt to help me feel strong. I took a deep breath and tried to take in all the words, all the information. I don't do well with "what ifs" and right now that's where we are and where we have to be until more test and more results start coming in. I was thankful that the technology is leaps and bounds ahead of where it was 16 years ago. All of this means more testing for Abe. Along with his muscle biopsy and lumbar puncture they will do a skin biopsy, blood and urine test. Two more things I think that I am forgetting. We may even find out more about Mary Elizabeth's diagnosis now if we can track down her muscle tissue and if it was processed and frozen correctly.
We couldn't ask for Dr. Shoffner and his assistant Camille to be more helpful or more wonderful. He is a brilliant man and he took so much time to explain it almost in words I could understand. Camille has been there to walk me through so much of this and will be with us as we coordinate all the things for surgery.
Abe did really well for his RMR test. The results should be back in a few days. I am attaching a couple of pictures of him during the test. I was thankful that I got to hold him through it. It really stressed him and we are having a hard time getting his seizures stopped.
The most wonderful part of my day was a delicious breakfast at Mimi's Cafe with my two favorite boys. I tell ya'll what, I am a stress eater and I am surprised I don't weigh 200 lbs. It was a wonderful meal though. The restaurant reminded me of Tony's at Magic Kingdom. The food was unlike any other. Lots of neat and different things on the menu. A nice time to regroup in between appts.
It's about time for Abe to have some more rescue meds so I better run. Thank you so much for your prayers! Thanks everyone for the uplifting messages that I received throughout the morning. What a way to get us through! We even received some info on a tandem wheelchair. Woohoo!!! We will be checking into on Friday when the wheelchair rep comes.
Thanks again for all the prayers. In case I don't get to update again before Thursday please pray for Michala's appt with the surgeon.
Michala's appt
Michala's appt went great! No tumor or cyst on her hip!!! PRAISE GOD! This is a "C" mom's biggest fear and biggest relief! Thank you Jesus! They did lots of xrays to make sure there was nothing there. The problem is that she has a shallow socket so it's making her hip poke out instead of sitting low enough in the socket. They don't think this is what is causing her pain though. She will possibly have to have surgery on it but they said not right now with her seizures being so bad.
No new info on the hospital closing. However the sweet Shriner I talked to a couple of weeks ago said their last meeting seemed promising.
Thank you so much for the prayers for a good appt and good results!
Please keep our friend Emily and her precious baby in your prayers. They were going to break her water in just a few minutes so maybe as I am typing this she will be having that sweet baby boy!
Thanks again for all the prayers and support! Tomorrow morning Abe has his RMR test and then his appt with Dr. Shoffner the mitochondrial specialist. Please keep Abe is your prayers that he will be able to endure the test so that we can get some accurate results from it.
No new info on the hospital closing. However the sweet Shriner I talked to a couple of weeks ago said their last meeting seemed promising.
Thank you so much for the prayers for a good appt and good results!
Please keep our friend Emily and her precious baby in your prayers. They were going to break her water in just a few minutes so maybe as I am typing this she will be having that sweet baby boy!
Thanks again for all the prayers and support! Tomorrow morning Abe has his RMR test and then his appt with Dr. Shoffner the mitochondrial specialist. Please keep Abe is your prayers that he will be able to endure the test so that we can get some accurate results from it.
Thursday, June 11, 2009
life
I have started this email so many times so maybe it means it doesn't need to be written. Marlee Anne is at VBS, Abe just had rescue meds, Mary Elizabeth is being her sweet sweet self, & Michala is resting from yet another blow out seizure. That in itself is enough to make me stress but wait there is more. This email is more for me so that I can get my thoughts in order but I know that some of you want details to keep up and pray specifically. So here goes. Please overlook the rambling if it's all over the place.
Sunday I was blessed by having the opportunity to go to North Covington Methodist for their homecoming. Little did I know that God was once again pouring the strong foundation for me to get through the coming week. I hate not being able to go to church as a family but was glad that I got to go.
My life long friend Terri sang In This Very Room. Whenever I heard that song I would think about the room/church we were in. Sunday for some reason my thoughts went to our home. I was flooded with a peace that yes in the very room where I hold my babies as they are having seizures and having trouble breathing HE is there with HIS joy, HIS love, HIS hope and HIS power. What a powerful message in that song.
Then my sweet friend Julie sang A Greater Yes. I had never heard this song. I am always blown away by Terri, Julie and Leslie's voices but this song just spoke volumes to me. I have always been a song person and love the words of songs.
This entire song spoke to me but here is the chorus. You never pray a prayer, your Father will not answer He can't ignore His child's earnest request While you're waiting and believingFor what you thought was bestTrust God if He says no….. You're still Blessed There must be a greater yes
I needed to hear those words and be reminded that my Father does hear me. I do not understand why things happen the way they do and I really do try to be patient and remind myself minute by minute this is only temporary.
Leslie sang Grace Will Always Be Greater. These words gave me peace. I praise You becauseI am fearfully madeYou formed my frameIn a secret placeAll of my daysOrdained before I breathedWritten in Your bookI needed to be reminded that my children, all 4 were perfectly made by GOD for a purpose.
Sunday night I took Marlee Anne to VBS kick off at FBC. Brooke had created a special needs class so that Mary Elizabeth & Michala could go to VBS. I was touched beyond words that she made that class for them and other special needs children. I know how many times it's easier to let them go unnoticed and how many times they get left out of things because there not always thought of in the general population. Not that anyone means to do it and I am not trying to step on toes here but it does happen all too often. Mike and I both were touched that Brooke thought and took the time to do that. Of course Marlee Anne thought it was the greatest thing ever. However they didn't get to go because of the "sickness junk" going around. With Michala and Abe's surgeries coming up soon we didn't want to risk anyone getting sick.
Marlee Anne decided she would still go to VBS. Monday didn't turn out to be the best day. I noticed she was on the playground all by herself and the girls were playing in another place. I didn't think anything about it though. When I picked she and Carson up and asked how it went she said she felt lonely. I asked her why and she explained that the girls in her class left her out. She said she asked a girl to be her friend, the girl said yes but then went off to play with her friends. When Marlee Anne went over to join them they walked away and ignored her. They are 7 years old! WHY does this petty girl stuff start so young? I hate it for her.
Brooke knew that something wasn't right and called her. After talking to her she asked if she would like to go in the 3rd grade class. She did that on Tuesday and so far so good. She seems to like that better. Each day she has come home sharing something good that she has learned.
She likes Mr. Jason, who the next day turned into Mr. Pastor Jason. She is too funny! OK speaking of Pastor Jason. Carson said his desk is a glass door with bibles as the legs of the desk. Someone please share that story with me. I am sure the door and the bibles have a story to tell.
Wednesday we had an after VBS pool party at Aunt Kim & Uncle Papa's. The kids all had a blast and really played good together. I got to spend some time with my long lost friend Sandie and that was really nice. Such a blessing to be with she and my other friends to catch up.
OK fun stuff aside here are where I need to sort my thoughts. Monday Abe had a very strange seizure. Not one that I can explain very well. Tuesday he had 2 of them. Wednesday he had several. They are not stopping easily with rescue meds and when the meds do stop them it only last 30 minutes to an hour. Last night it did last 2. So now we look at all his seizure meds and pray the VNS surgery gets scheduled soon. Another way of God confirming this is the right decision.
Tuesday I got a phone call from Dr. Shoffner's nurse. I am sure some of this won't make sense and will be confusing. It's confusing for me and that's why I need to get it all out on paper so I have it there to sort through. Dr. Shoffner is the mito specialist in Atlanta that diagnosed Mary Elizabeth. He wants Abe to have a resting metabolic rate test on Tuesday morning. This is at a place we have never been for a test we have never had. I am a little anxious.
Monday Mike and Marlee Anne are taking Michala for limb deficiency clinic at Shriners Hospital in Greenville, SC. They have to leave at 4:00 AM so we decided it would be best for Mary Elizabeth and Abe to stay home. Over the past week Michala has a place on her hip come up. We think it's her hip bone. It's on her good leg. Mike is going to request an xray be done if it's not time for one. We want to make sure it's not out of place or something. Please keep them in your prayers. Praying specifically for good results and a smooth appt. I am sure I will send a reminder prayer request.
Next Thursday we will be meeting with Michala's surgeon that will be doing her VNS. He is an ENT that will put her VNS in her back. We are also going to discuss Salivary Gland Botox Injection to possibly help with her drooling. They say that once we meet with the surgeon the VNS surgery is scheduled fairly quickly.
After we meet with Dr. Shoffner on Tuesday we will set up the appt to meet with the neurosurgeon about Abe's VNS surgery. We are hoping to coordinate some if not all his surgeries at the same time to cut down on sedation.
So many of you have asked about me and been praying for my health. Thank you! I am scheduled for a follow up ultrasound on June 29th and we will go from there. Thank you!!!
One last prayer concern please. We have about $3500.00 worth of unpaid medical bills for Abe that we are appealing with the insurance company. I KNOW that God will provide and take care of this. However having it looming over us is not good for any of us. Please pray that the appeals are accepted and insurance will cover them. The paper work in itself is more than I have time for right now.
OK I am so hoping that this email will give me some added peace and kinda of a release. It will help me get my thoughts in order to prepare for the days ahead. Thank you so much for continuing to pray with us!
Sunday I was blessed by having the opportunity to go to North Covington Methodist for their homecoming. Little did I know that God was once again pouring the strong foundation for me to get through the coming week. I hate not being able to go to church as a family but was glad that I got to go.
My life long friend Terri sang In This Very Room. Whenever I heard that song I would think about the room/church we were in. Sunday for some reason my thoughts went to our home. I was flooded with a peace that yes in the very room where I hold my babies as they are having seizures and having trouble breathing HE is there with HIS joy, HIS love, HIS hope and HIS power. What a powerful message in that song.
Then my sweet friend Julie sang A Greater Yes. I had never heard this song. I am always blown away by Terri, Julie and Leslie's voices but this song just spoke volumes to me. I have always been a song person and love the words of songs.
This entire song spoke to me but here is the chorus. You never pray a prayer, your Father will not answer He can't ignore His child's earnest request While you're waiting and believingFor what you thought was bestTrust God if He says no….. You're still Blessed There must be a greater yes
I needed to hear those words and be reminded that my Father does hear me. I do not understand why things happen the way they do and I really do try to be patient and remind myself minute by minute this is only temporary.
Leslie sang Grace Will Always Be Greater. These words gave me peace. I praise You becauseI am fearfully madeYou formed my frameIn a secret placeAll of my daysOrdained before I breathedWritten in Your bookI needed to be reminded that my children, all 4 were perfectly made by GOD for a purpose.
Sunday night I took Marlee Anne to VBS kick off at FBC. Brooke had created a special needs class so that Mary Elizabeth & Michala could go to VBS. I was touched beyond words that she made that class for them and other special needs children. I know how many times it's easier to let them go unnoticed and how many times they get left out of things because there not always thought of in the general population. Not that anyone means to do it and I am not trying to step on toes here but it does happen all too often. Mike and I both were touched that Brooke thought and took the time to do that. Of course Marlee Anne thought it was the greatest thing ever. However they didn't get to go because of the "sickness junk" going around. With Michala and Abe's surgeries coming up soon we didn't want to risk anyone getting sick.
Marlee Anne decided she would still go to VBS. Monday didn't turn out to be the best day. I noticed she was on the playground all by herself and the girls were playing in another place. I didn't think anything about it though. When I picked she and Carson up and asked how it went she said she felt lonely. I asked her why and she explained that the girls in her class left her out. She said she asked a girl to be her friend, the girl said yes but then went off to play with her friends. When Marlee Anne went over to join them they walked away and ignored her. They are 7 years old! WHY does this petty girl stuff start so young? I hate it for her.
Brooke knew that something wasn't right and called her. After talking to her she asked if she would like to go in the 3rd grade class. She did that on Tuesday and so far so good. She seems to like that better. Each day she has come home sharing something good that she has learned.
She likes Mr. Jason, who the next day turned into Mr. Pastor Jason. She is too funny! OK speaking of Pastor Jason. Carson said his desk is a glass door with bibles as the legs of the desk. Someone please share that story with me. I am sure the door and the bibles have a story to tell.
Wednesday we had an after VBS pool party at Aunt Kim & Uncle Papa's. The kids all had a blast and really played good together. I got to spend some time with my long lost friend Sandie and that was really nice. Such a blessing to be with she and my other friends to catch up.
OK fun stuff aside here are where I need to sort my thoughts. Monday Abe had a very strange seizure. Not one that I can explain very well. Tuesday he had 2 of them. Wednesday he had several. They are not stopping easily with rescue meds and when the meds do stop them it only last 30 minutes to an hour. Last night it did last 2. So now we look at all his seizure meds and pray the VNS surgery gets scheduled soon. Another way of God confirming this is the right decision.
Tuesday I got a phone call from Dr. Shoffner's nurse. I am sure some of this won't make sense and will be confusing. It's confusing for me and that's why I need to get it all out on paper so I have it there to sort through. Dr. Shoffner is the mito specialist in Atlanta that diagnosed Mary Elizabeth. He wants Abe to have a resting metabolic rate test on Tuesday morning. This is at a place we have never been for a test we have never had. I am a little anxious.
Monday Mike and Marlee Anne are taking Michala for limb deficiency clinic at Shriners Hospital in Greenville, SC. They have to leave at 4:00 AM so we decided it would be best for Mary Elizabeth and Abe to stay home. Over the past week Michala has a place on her hip come up. We think it's her hip bone. It's on her good leg. Mike is going to request an xray be done if it's not time for one. We want to make sure it's not out of place or something. Please keep them in your prayers. Praying specifically for good results and a smooth appt. I am sure I will send a reminder prayer request.
Next Thursday we will be meeting with Michala's surgeon that will be doing her VNS. He is an ENT that will put her VNS in her back. We are also going to discuss Salivary Gland Botox Injection to possibly help with her drooling. They say that once we meet with the surgeon the VNS surgery is scheduled fairly quickly.
After we meet with Dr. Shoffner on Tuesday we will set up the appt to meet with the neurosurgeon about Abe's VNS surgery. We are hoping to coordinate some if not all his surgeries at the same time to cut down on sedation.
So many of you have asked about me and been praying for my health. Thank you! I am scheduled for a follow up ultrasound on June 29th and we will go from there. Thank you!!!
One last prayer concern please. We have about $3500.00 worth of unpaid medical bills for Abe that we are appealing with the insurance company. I KNOW that God will provide and take care of this. However having it looming over us is not good for any of us. Please pray that the appeals are accepted and insurance will cover them. The paper work in itself is more than I have time for right now.
OK I am so hoping that this email will give me some added peace and kinda of a release. It will help me get my thoughts in order to prepare for the days ahead. Thank you so much for continuing to pray with us!
A parent's greatest joy!
I think my prayer for my children to be saved started before they were even born. Mike and I both remember the day we were saved very clearly. We try to live our lives so that our children and others see Christ through us. There are so many times when we falter and our children see those times too.
For so long Marlee Anne has talked about Jesus living in her heart, what happens when she dies and how to live her life that is pleasing to God. Lately each time Mike and I go to the funeral home or to a funeral she ask what is going to happen when she dies. Last week when Mr. Bill died Mike and I shared a lot about how he lived his life and what he meant to us. I know that Mr. Bill played a large part in my salvation along with seeing and hearing my mama and daddy read their bibles and praying. There were so many people at Calvary Baptist Church that played a part in my salvation. Another one of those God planning my way.
Well last week Marlee Anne asked Mike if he would baptize her. I don't know of a greater joy for a daddy than to have his child ask that of him. So many nights as we pray Marlee Anne thanks Jesus for living in her heart. We wanted to make sure that she understood it all. As she asked more and more questions we could tell there was an urgency for her to feel secure and grounded in her faith. Today we sat down with her went over the scripture again and made sure she knew what she was doing. She prayed and asked Jesus into her heart. There were lots of tears of joy.
If I was any more blessed my heart would surely bust. I am thankful for my wonderful husband who lives his life daily and allows God to shine through so that his daughter wanted what he has and wanted what he lives. I am thankful for our loving Christian parents that raised us to know who Jesus is.
I heard the saying once would you rather live your life as if there is a God and die to find out there isn't or live your life as if there isn't a God and die to find out there is. I am thankful I know! I am thankful that my family will be with me in Heaven. My prayer is that I will have childlike faith and not question what surrounds me each day. That I will trust and allow Him to handle all that is around. I am sure He has lots to teach me through Marlee Anne.
Thanks for sharing in this joy with us! We told Marlee Anne that we will always be there for her to come to us. That we will hold her accountable and that she can hold us accountable. Mike laughed and said she already does that. She really does. At least once a day she reminds us that something we did wouldn't make God happy. So know we ask each of you to join us in lifting her up in her walk. Help us grow this child that God has loaned us to be more and more like Him each day. She has a good heart that wants to learn and take it all in.
We love and appreciate each of you for your love, support, friendship and prayers!
For so long Marlee Anne has talked about Jesus living in her heart, what happens when she dies and how to live her life that is pleasing to God. Lately each time Mike and I go to the funeral home or to a funeral she ask what is going to happen when she dies. Last week when Mr. Bill died Mike and I shared a lot about how he lived his life and what he meant to us. I know that Mr. Bill played a large part in my salvation along with seeing and hearing my mama and daddy read their bibles and praying. There were so many people at Calvary Baptist Church that played a part in my salvation. Another one of those God planning my way.
Well last week Marlee Anne asked Mike if he would baptize her. I don't know of a greater joy for a daddy than to have his child ask that of him. So many nights as we pray Marlee Anne thanks Jesus for living in her heart. We wanted to make sure that she understood it all. As she asked more and more questions we could tell there was an urgency for her to feel secure and grounded in her faith. Today we sat down with her went over the scripture again and made sure she knew what she was doing. She prayed and asked Jesus into her heart. There were lots of tears of joy.
If I was any more blessed my heart would surely bust. I am thankful for my wonderful husband who lives his life daily and allows God to shine through so that his daughter wanted what he has and wanted what he lives. I am thankful for our loving Christian parents that raised us to know who Jesus is.
I heard the saying once would you rather live your life as if there is a God and die to find out there isn't or live your life as if there isn't a God and die to find out there is. I am thankful I know! I am thankful that my family will be with me in Heaven. My prayer is that I will have childlike faith and not question what surrounds me each day. That I will trust and allow Him to handle all that is around. I am sure He has lots to teach me through Marlee Anne.
Thanks for sharing in this joy with us! We told Marlee Anne that we will always be there for her to come to us. That we will hold her accountable and that she can hold us accountable. Mike laughed and said she already does that. She really does. At least once a day she reminds us that something we did wouldn't make God happy. So know we ask each of you to join us in lifting her up in her walk. Help us grow this child that God has loaned us to be more and more like Him each day. She has a good heart that wants to learn and take it all in.
We love and appreciate each of you for your love, support, friendship and prayers!
Saturday, June 06, 2009
thanks for the prayers
I just wanted to thank ya'll for the prayers yesterday. They found something on Abe's ultrasound but they are not sure if it's a testicle or a lymph node. He will have to have surgery to see what it is and see if they can find his testicle and move it down. This needs to be done so that the testicle doesn't get angry and increase the chance of cancer.
This will be another surgery in addition to the VNS, lumbar puncture & muscle biopsy. We are trying now to see what can be done together so we can cut down on the number of times he is put to sleep.
Dr. Wrubel will be the neurosurgeon doing his VNS and possibly his LP, & muscle biopsy. Someone uses him or has used him. I am thinking it's Kylie. If not will whoever it is that uses him speak up and let us know what ya'll think. We are waiting on our first appt with him.
Thanks again for your prayers!
This will be another surgery in addition to the VNS, lumbar puncture & muscle biopsy. We are trying now to see what can be done together so we can cut down on the number of times he is put to sleep.
Dr. Wrubel will be the neurosurgeon doing his VNS and possibly his LP, & muscle biopsy. Someone uses him or has used him. I am thinking it's Kylie. If not will whoever it is that uses him speak up and let us know what ya'll think. We are waiting on our first appt with him.
Thanks again for your prayers!
fun stuff I made
I wanted to show you my latest vinyl project. I lifted the soap bottle projects from a very talented friend. Then I was trying to find something cute to do for Karland's nursery. I thought the big pink bottle of baby lotion with the black K and dots would go great in her black & white nursery.
Catie's golf tournament
This is our friend Catie's tournament. For time sake I am sending her mom's entire email out. Thought some of you might be interested in playing or donating. Thanks!!!
Hi all! First of all, sorry for the mass e-mail! :) I hope this finds everyone doing well and that your summer is getting off to a good start.
We're gearing up for our golf tournament for this year and it's coming up quickly. We've taken a couple of years off, but we're back and we're hoping to have a great turnout for the tourney. The tournament will be held on June 20 at Black Creek Golf Club. For details on the tourney, go to http://www.blogger.com/. This is the first year the tournament will be a memorial tournament, but we do this to honor our sweet Catie and the life she lived. We also do it so that other families won't know the devastating loss that is so often caused by childhood cancer. All proceeds will go directly to CURE Childhood Cancer (http://www.blogger.com/). We are in need of sponsors (levels are: Hole for $100 and Corporate for $500 and $1000), golfers, and door prizes. Each sponsorship comes w/ different perks, so visit our website to check them out (http://catiescureclassic.com/).
Given the lovely economic times we're in, we're taking a bit of a different approach this year. We are still seeking "normal" sponsors (at the levels listed above), but we also realize that smaller donations add up to make big donations. We are seeking folks who might not be able to be a hole sponsor, but could handle giving $25 (or $10 or $50). If we could have 100 people donate $25, that would be $2500 (and the equivalent of 25 hole sponsors)... 200 folks giving $25 would give us $5000, and so forth.
So, here is my challenge to you. (I'm not usually one to issue challenges, but today I'm going for it). If you are able and willing to donate to our cause, please do. You can easily do it through PayPal on our site (http://www.blogger.com/) or to Catie's Fund page ( http://www.blogger.com/). If you donate at Catie's Fund page, please list "Catie's Fund for Golf Tournament" in the comments section. The second part of my challenge is this... PLEASE forward this on to folks on your contact list. If half of the folks who receive this e-mail give a small amount of money and if everyone forwards this on, we could really build a large army and raise a lot of money.
Forwarding is a HUGE part of this effort because it allows us to reach a large number of people.
Thanks for taking the time to read this and thanks for forwarding this on and donating if you are able. These donations (which need to be made by June 26) fund research that is literally life-giving.
Thanks so much,
Tre' and Jenny Wilkins
http://www.blogger.com/
Hi all! First of all, sorry for the mass e-mail! :) I hope this finds everyone doing well and that your summer is getting off to a good start.
We're gearing up for our golf tournament for this year and it's coming up quickly. We've taken a couple of years off, but we're back and we're hoping to have a great turnout for the tourney. The tournament will be held on June 20 at Black Creek Golf Club. For details on the tourney, go to http://www.blogger.com/. This is the first year the tournament will be a memorial tournament, but we do this to honor our sweet Catie and the life she lived. We also do it so that other families won't know the devastating loss that is so often caused by childhood cancer. All proceeds will go directly to CURE Childhood Cancer (http://www.blogger.com/). We are in need of sponsors (levels are: Hole for $100 and Corporate for $500 and $1000), golfers, and door prizes. Each sponsorship comes w/ different perks, so visit our website to check them out (http://catiescureclassic.com/).
Given the lovely economic times we're in, we're taking a bit of a different approach this year. We are still seeking "normal" sponsors (at the levels listed above), but we also realize that smaller donations add up to make big donations. We are seeking folks who might not be able to be a hole sponsor, but could handle giving $25 (or $10 or $50). If we could have 100 people donate $25, that would be $2500 (and the equivalent of 25 hole sponsors)... 200 folks giving $25 would give us $5000, and so forth.
So, here is my challenge to you. (I'm not usually one to issue challenges, but today I'm going for it). If you are able and willing to donate to our cause, please do. You can easily do it through PayPal on our site (http://www.blogger.com/) or to Catie's Fund page ( http://www.blogger.com/). If you donate at Catie's Fund page, please list "Catie's Fund for Golf Tournament" in the comments section. The second part of my challenge is this... PLEASE forward this on to folks on your contact list. If half of the folks who receive this e-mail give a small amount of money and if everyone forwards this on, we could really build a large army and raise a lot of money.
Forwarding is a HUGE part of this effort because it allows us to reach a large number of people.
Thanks for taking the time to read this and thanks for forwarding this on and donating if you are able. These donations (which need to be made by June 26) fund research that is literally life-giving.
Thanks so much,
Tre' and Jenny Wilkins
http://www.blogger.com/
Friday, June 05, 2009
Where to start?
I hate when I get behind on emails because it's so hard to condense it all in one. That's my nice way of saying this email could be long.
Last Friday a very dear friend of ours past away. Mr. Bill Pratt was 92 years old. He is one of the reasons Mike and I have been married for almost 23 years. He gave us wonderful advice on our wedding day. We still hold on to and believe that. We cherish so many wonderful memories of he and his precious wife. We know that the first thing he did when he got to Heaven was to hug her, tell her he loves her, ask her to fix him a pizza and peanut butter cake. When he finished eating he step out onto the most beautiful golf course ever. Mike said I know he is the most pleased and satisfied of all men right now. He definitely heard the word's "well done my good and faithful servant" from our God. I am blessed to have known him and have my life touched by him for so many years.
His funeral was in the church I grew up in. As I sat there on Monday morning looking around at all the warm and familiar faces an unreal peace came over me. It was as if that church was the hands of God and he was cradling me. As if to say I am here. I am with you. A gentle reminder that was so very needed! So many amazing memories in the sacred place. God is good!
The graveside was a Covington Mill Cemetery. As we walked through there it was so hard to read the names of so many people that have played such a huge part in who I am today. I miss them but I am forever thankful that I knew them. Because of the lives they led I try to be a better person. I want those incredible things said about me when I am gone. I want to be remembered in a way that is pleasing to God. I want to live my life today and every day where I will have no regrets. Each day I want to strive to be more and more like HIM. I fall short so many times. I am thankful He is there to pick me up.
Monday morning Marlee Anne started golf camp. She was so excited and really enjoyed it. Tuesday I took her and she went right in. She did kiss me and tell me she loved me but she had no trouble leaving me. I am really thankful for her independence but I have to say it stung a little bit. It was hard to see her grow up. She came home each day with so much excitement and so much to share. She got her on golf clubs for her birthday. She hits golf balls each night, keeps her clubs clean and really loves the sport. I am proud and her daddy loves it. Today she had a tournament and asked Mike to be her caddy.
Tomorrow Abe has an appt at Egleston for his ultrasound. Then we will head over to the urologist to review the results. Please pray that all this goes well. Pray for the girls while we are gone.
Yesterday I had an appt because of the pain I have been having. Last week I started bleeding too. My wonderful doctor asked questions and quickly found the problem with an ultrasound. I have a baseball size cyst on my ovary. This has been causing my pain and the bleeding. I will go back in 4 weeks to have a repeat ultrasound. Please pray that the cyst just goes away. Whether it's absorbed or pops I don't care. Just that it goes away.
Abe is starting to have another seizure so I have to run. It hasn't been a good day for him or Michala. Full moon and rain. YAY! NOT! I didn't proof this email once again so please overlook any oops!
Thank you for your prayers and support!
Last Friday a very dear friend of ours past away. Mr. Bill Pratt was 92 years old. He is one of the reasons Mike and I have been married for almost 23 years. He gave us wonderful advice on our wedding day. We still hold on to and believe that. We cherish so many wonderful memories of he and his precious wife. We know that the first thing he did when he got to Heaven was to hug her, tell her he loves her, ask her to fix him a pizza and peanut butter cake. When he finished eating he step out onto the most beautiful golf course ever. Mike said I know he is the most pleased and satisfied of all men right now. He definitely heard the word's "well done my good and faithful servant" from our God. I am blessed to have known him and have my life touched by him for so many years.
His funeral was in the church I grew up in. As I sat there on Monday morning looking around at all the warm and familiar faces an unreal peace came over me. It was as if that church was the hands of God and he was cradling me. As if to say I am here. I am with you. A gentle reminder that was so very needed! So many amazing memories in the sacred place. God is good!
The graveside was a Covington Mill Cemetery. As we walked through there it was so hard to read the names of so many people that have played such a huge part in who I am today. I miss them but I am forever thankful that I knew them. Because of the lives they led I try to be a better person. I want those incredible things said about me when I am gone. I want to be remembered in a way that is pleasing to God. I want to live my life today and every day where I will have no regrets. Each day I want to strive to be more and more like HIM. I fall short so many times. I am thankful He is there to pick me up.
Monday morning Marlee Anne started golf camp. She was so excited and really enjoyed it. Tuesday I took her and she went right in. She did kiss me and tell me she loved me but she had no trouble leaving me. I am really thankful for her independence but I have to say it stung a little bit. It was hard to see her grow up. She came home each day with so much excitement and so much to share. She got her on golf clubs for her birthday. She hits golf balls each night, keeps her clubs clean and really loves the sport. I am proud and her daddy loves it. Today she had a tournament and asked Mike to be her caddy.
Tomorrow Abe has an appt at Egleston for his ultrasound. Then we will head over to the urologist to review the results. Please pray that all this goes well. Pray for the girls while we are gone.
Yesterday I had an appt because of the pain I have been having. Last week I started bleeding too. My wonderful doctor asked questions and quickly found the problem with an ultrasound. I have a baseball size cyst on my ovary. This has been causing my pain and the bleeding. I will go back in 4 weeks to have a repeat ultrasound. Please pray that the cyst just goes away. Whether it's absorbed or pops I don't care. Just that it goes away.
Abe is starting to have another seizure so I have to run. It hasn't been a good day for him or Michala. Full moon and rain. YAY! NOT! I didn't proof this email once again so please overlook any oops!
Thank you for your prayers and support!
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