Hi Everyone!
There are no words for how very thankful I am to everyone for your sweet e-mails, calls, and hugs these last few days. We are so very thankful for the friends and family God has given us. Many of you have asked how we are doing, especially since my little angry outburst, so here is an update. It really was amazing how much better I felt the next morning. My neighbor came over that night, and we sat on my front porch and talked and cried until about 2:30 a.m. After that, I got a good night's sleep...the first in days. The next day I was weepy, and now I am just sort of all over the place. I am a little worried about Jeff, though. He really has not had much chance at all to express many feelings, which is sort of a "guy" thing anyway, I guess. Our schedules have just been so busy. Last night marked the end of a long concert, rehearsal, church schedule. On the way home, I just felt like the life had been drained out of me. I think I am doing much better, and then someone says something, or asks me how Clara is doing (which is so very sweet...don't get me wrong), and the waterworks start all over. But once we got home and the kids were in bed, Jeff and I laid across our bed and for the first time, really, were able to express some deep-down feelings about this whole thing. We fell asleep holding hands with tears running down both of our cheeks...Jeff was still fully dressed down to the shoes. Somewhere along the way he must have woken up and gotten ready for bed, because when Megan woke me up at 2:00 this morning, which is very strange for her, he was in his PJs and fast asleep. So, while we are all over the place emotionally, still, we are not pulling away from each other, but instead, drawing close to each other and God. I don't know where people go for comfort if they don't have a relationship with the Lord. So there's an update on us, but enough of sadness. Some really fun things have happened in the last few days!
On Monday night, we had our last Upward practice of 2009. Once again, I am coaching cheerleading and I love it! I am a little behind getting on board, but I plan to use the next few weeks to get organized and get my ducks in a row. Tuesday night was spectacular! Alyssa and Emilie had their Georgia Children's Chorus concert. I always love these concerts. There is nothing more beautiful to me than children's voices, and that is one incredible choir. I feel so blessed that my girls have the opportunity to be a part of it. Alyssa loves to sing, but you sometimes would not know it to look at her (the spotlight is not her thing). This was Emilie's first concert, and she looked like a little angel! I had a hard time taking my eyes off of her sweet little face! She had fun and took it all in, looking around the whole auditorium during applause. She didn't look one bit nervous! That's my girl! Last night was our children's Christmas music presentation at church. It was enjoyable, as always. The kids did really well, and it was a sweet time to focus on Christmas and remember the real reason we celebrate. So now, we are through with all of our scheduled stuff. I am hoping to finally do some fun "Christmasy" things with the girls. Many of you know how I ruined our gingerbread houses the other day....twice..so we may have to make some different memories this year, but I am determined to have some fun with these precious girls. We have planned for tonight to be a fun family night. I still don't know what we are doing, but we will be together and relaxed. Those are the only two requirements! We considered Night of Lights, but that is $40 this year....can you believe that??? So we may ride around and just look at local lights, or we may just stay home and watch a Christmas movie and eat popcorn or play games...who knows. I'll keep you posted. :-)
Please continue to pray for Clara. She has had some very painful days the last few days. I am very anxious about getting her going on her supplements. Just pray we can get that all worked out. One interesting tidbit....many posts ago i told you there are only two places in the country that do live muscle biopsies, but I wasn't sure where the other one was. Well, I found out it is the Cleveland Clinic in Ohio. That is only about a 4 hour drive from where we will be in Michigan, which is still far, but it's not California or somewhere like that. We do not want to move until it is God's timing, and right now there is comfort in being near her doctors, but it is nice to know the "other" mito specialists will be so close. There are so many blessings in all of this....that's a post for next time.
Love you all!
Jeannie
Thursday, December 17, 2009
Monday, December 14, 2009
Brutal Honesty
***Brutal Honesty Alert*** I have always had a knack for being brutally honest, although, over the years, many of my harsh, rough edges have been rubbed smooth by God's grace and Jeff's example. However, I have found in the last few days, as I am more and more emotionally exhausted, that I am having a harder time being gentle with my words. I want to say all the right things and have all the right attitudes. I have even been trying to go on with my life as if there is nothing wrong. After all, that does make everyone else more comfortable. More than anything, I want to be a Godly example to those around me. I also do not want to "wear out" my friends by being negative or a downer. (That's usually a good way to get people to run the other way when they see you.) Having said all of that, I need a chance to express some true feelings, and this, my online journal, seems to be the easiest way.
To be quite frank, this news about Clara has been much harder to deal with than I ever thought it would be. We knew what they were looking for, but it wasn't definite yet. Now that we know for sure, there is no going back. There is no chance our precious little girl is ever going to be "normal", and she is going to be dealing with this for the rest of her life. It is not okay. As far as I am concerned at this very moment, it is not going to be okay. This is not going away....managed, maybe....but never going away. Our sweet, wonderful little girl is going to be dealing with this disease that is wreaking havoc on her body for the REST OF HER LIFE, and I am MAD! MAD!MAD! MAD! So mad, in fact, that I want to lay in the floor and pitch the biggest fit EVER!!! I am mad that she is suffering. I am mad that it is so dad-gum expensive to manage. To be honest, I have been really hurt at some people that I thought cared more about her and have said NOTHING about any of this. (Okay...I warned you this was raw emotion...) I am well aware that that is stinking old pride rising up in me and in my head I KNOW life is not all about me. I know I should not expect so much of people and I know I am being selfish. I also know I will get over this part and I will realize, and be okay with the fact, that we all have our own busy lives, and I am sure that at some point, I have not been there for someone else in a time of hurt. But right now, just for this hour, I just feel like I need to be mad. Isn't that a stage of grief? Anger? I am grieving the health of a child. I am grieving the loss of her energy-filled childhood days, because that is just not possible for her. Yes, I know I have so much to be thankful for. Sooooo much. I just needed a tantrum. Thanks.
Thanks to all of you who have prayed for our girl. We are more thankful than you will ever know. My temptation right now is to not post this, for fear of what people might think. However, I have been encouraged, just tonight, by a Mom who has a child that suffers with something different, to feel what I need to feel. That was very good advice. Up to this point, I have tried so hard to say what I thought was expected of me. Who knows, maybe this will help someone else somehow. I don't know, but it sure helped me. I feel much better now. I also don't see the benefit of trying to "say all the right things". What encouragement is that for someone who is going through something like this and feels guilty for feeling what they feel. Well, now they don't have to. I have been honest, and brutally so.
Have a wonderful night. Please don't run the next time you see me. I promise I will smile and say, "hello". :-)
Much Love,
Jeannie
To be quite frank, this news about Clara has been much harder to deal with than I ever thought it would be. We knew what they were looking for, but it wasn't definite yet. Now that we know for sure, there is no going back. There is no chance our precious little girl is ever going to be "normal", and she is going to be dealing with this for the rest of her life. It is not okay. As far as I am concerned at this very moment, it is not going to be okay. This is not going away....managed, maybe....but never going away. Our sweet, wonderful little girl is going to be dealing with this disease that is wreaking havoc on her body for the REST OF HER LIFE, and I am MAD! MAD!MAD! MAD! So mad, in fact, that I want to lay in the floor and pitch the biggest fit EVER!!! I am mad that she is suffering. I am mad that it is so dad-gum expensive to manage. To be honest, I have been really hurt at some people that I thought cared more about her and have said NOTHING about any of this. (Okay...I warned you this was raw emotion...) I am well aware that that is stinking old pride rising up in me and in my head I KNOW life is not all about me. I know I should not expect so much of people and I know I am being selfish. I also know I will get over this part and I will realize, and be okay with the fact, that we all have our own busy lives, and I am sure that at some point, I have not been there for someone else in a time of hurt. But right now, just for this hour, I just feel like I need to be mad. Isn't that a stage of grief? Anger? I am grieving the health of a child. I am grieving the loss of her energy-filled childhood days, because that is just not possible for her. Yes, I know I have so much to be thankful for. Sooooo much. I just needed a tantrum. Thanks.
Thanks to all of you who have prayed for our girl. We are more thankful than you will ever know. My temptation right now is to not post this, for fear of what people might think. However, I have been encouraged, just tonight, by a Mom who has a child that suffers with something different, to feel what I need to feel. That was very good advice. Up to this point, I have tried so hard to say what I thought was expected of me. Who knows, maybe this will help someone else somehow. I don't know, but it sure helped me. I feel much better now. I also don't see the benefit of trying to "say all the right things". What encouragement is that for someone who is going through something like this and feels guilty for feeling what they feel. Well, now they don't have to. I have been honest, and brutally so.
Have a wonderful night. Please don't run the next time you see me. I promise I will smile and say, "hello". :-)
Much Love,
Jeannie
Saturday, December 12, 2009
Coming Around
What a week! After reading my last post, I realized that it may have come across a little negative. My intention is never to depress anyone. I have been really surprised at how hard this has all been for me to swallow. It is one thing to be-bop along, thinking you know what is wrong with your child. It is another thing altogether to be hit with the harsh reality that there is something wrong. Not only something wrong, but something that cannot be fixed.
As always, there are so many blessings. I had dinner tonight with "Mito Mom", the new phone friend I told you about in the previous post. I don't want to mention her name here in interest of her privacy, but I think that name is very fitting. I envision the whole "super hero" thing when I say "Mito Mom", and to me, she is a super hero. She has five children and a husband with a mito disease and she manages it all so well. I have learned SO much form her. I still have along way to go, though. She brought her little girl and she and Clara had a ball! They did very well while we sat in Chili's for 4 1/2 hours!
I guess the hardest part of this whole thing for me is trying to look into Clara's future. To look at her, she really looks like a healthy little girl with a funny walk. The downside to learning so much, though, is that I am also learning just how ugly this disease is. The more I read, the more I cringe. It has been very easy for other people to say "It's going to be okay", and while I pray that is the case, this thing can get very ugly. Our prayer is still for complete healing. In the meantime, we are going to manage this thing the best we can. We are still in the process of trying to get her supplements. One has to be ordered through a website and is VERY expensive and the other one we are still waiting for the prescription to come in the mail. The hope is that these will greatly increase her energy and reduce her pain. We are going to work very hard to keep her healthy, as mito kids do not do well with sickness, manage her blood sugar, and keep her from getting too hot or too cold. We are going to try to avoid anything that causes her to use an excess of energy. From what I know so far, that seems to be the most important thing. Mito Mom described it as an "energy budget" and you have to be careful how you spend it.
Emotionally, I think Jeff and I are started to "deal" a little better than we were three days ago. There are still so many questions we want answered. It is just going to be a process.
Thank you to all of you who have stuck with us during this long diagnosis process. We appreciate your prayers, phone calls, cards, and encouraging words.
Much love!
Jeannie
As always, there are so many blessings. I had dinner tonight with "Mito Mom", the new phone friend I told you about in the previous post. I don't want to mention her name here in interest of her privacy, but I think that name is very fitting. I envision the whole "super hero" thing when I say "Mito Mom", and to me, she is a super hero. She has five children and a husband with a mito disease and she manages it all so well. I have learned SO much form her. I still have along way to go, though. She brought her little girl and she and Clara had a ball! They did very well while we sat in Chili's for 4 1/2 hours!
I guess the hardest part of this whole thing for me is trying to look into Clara's future. To look at her, she really looks like a healthy little girl with a funny walk. The downside to learning so much, though, is that I am also learning just how ugly this disease is. The more I read, the more I cringe. It has been very easy for other people to say "It's going to be okay", and while I pray that is the case, this thing can get very ugly. Our prayer is still for complete healing. In the meantime, we are going to manage this thing the best we can. We are still in the process of trying to get her supplements. One has to be ordered through a website and is VERY expensive and the other one we are still waiting for the prescription to come in the mail. The hope is that these will greatly increase her energy and reduce her pain. We are going to work very hard to keep her healthy, as mito kids do not do well with sickness, manage her blood sugar, and keep her from getting too hot or too cold. We are going to try to avoid anything that causes her to use an excess of energy. From what I know so far, that seems to be the most important thing. Mito Mom described it as an "energy budget" and you have to be careful how you spend it.
Emotionally, I think Jeff and I are started to "deal" a little better than we were three days ago. There are still so many questions we want answered. It is just going to be a process.
Thank you to all of you who have stuck with us during this long diagnosis process. We appreciate your prayers, phone calls, cards, and encouraging words.
Much love!
Jeannie
Wednesday, December 9, 2009
A Diagnosis
I always thought a diagnosis would bring me some comfort, in some way. Now I am not so sure. Up to this point I have been able to think, "Well, we probably have a mitochondrial disease, but it's not definite". You know, ignorance is bliss. I knew for sure that if we didn't get a diagnosis, I would be very frustrated because I would feel like we were right back at square one, knowing we had a problem but having no idea how to fix it. As of yesterday, we have a diagnosis, and while there are treatments available, there is no way to fix-it. So, am I comforted? No. Am I glad to know what we are dealing with? Yes. Is it going to be easy? Absolutely, no.
Clara has a mitochondrial myopathy (muscle disease). While we do not have the "specifics", as the genetic testing is not back, we have enough information for her neurologist to give her that diagnosis. I could go into details, but really, I just don't have the energy today. We do have a regimen of supplements that we are to start with her immediately. One is called Carnitor, to increase her levels of Carnitine and the other one is called CoQ10. Carnitor is covered with a prescription and the CoQ10 usually is not. There is only one brand she can take and they have put her on a high dosage. We are praying this will help her with her muscle pain and fatigue. We are also paying close attention for signs of blood sugar problems and ketones in her urine. These are VERY normal for mito kids. Their little bodies are just not efficient at making energy.
I believe there are blessings to be found in every situation, and without a doubt, so many things to be thankful for. I also believe God puts people in our lives for a reason. One of the biggest blessings right now is a relationship with a dear friend who has a son with degenerative diseases. It has been so great to talk with a Mom who understands the pain in my heart, something I never would have understood if I were not dealing with this. Another blessing is someone who I have not even met, yet, but have been put into contact with by a sweet college friend. This Mom has 5 children and a husband with mito diseases. I spoke with her on the phone last night for 5 hours. Those of you who know me KNOW I am not a phone talker, but I can tell you that the time flew by while my pencil flew all over my paper. Our doctors are so great at giving us technical information, but not always so great at telling how to manage the day-to-day. There is so much to be learned form experience. As we spoke, so many light bulbs went off for me. There have been so many things in her life that I keep thinking have to add up to something but was always told "no." Well...they do and they are all common things for mito kids: throwing up undigested food 24-48 hours after eating it, drooling, big heads, sugar cravings, eating issues at birth, crankiness, and the list goes on. And while no two people have the "same" mito disease, there can definitely be similarities. Her kids and Clara have many things in common. I feel like I am now a few steps ahead on understanding how to care for her after our talk. Thank You, Lord! There are no "formulas" and mito is not predictable, but I am armed with some knowledge, and that is good. On the flip-side of that coin, I have a little more knowledge, so now I have a lot more questions...this is going to be a process, for sure. It's a funny thing. The more I learn, the more I don't' know.
I feel, sometimes, like I am draining everyone asking for prayers for our family. I do believe that is what believers are supposed to do...we want to pray for you, too!! We do covet your prayers for Clara. We are still believing she can be healed completely. In the meantime, please pray for me and Jeff to communicate and for our marriage to stay strong as we juggle all of this "life stuff". More than anything, we want God's will. We have specific things we pray for, but right now, it is obvious He has His own timing. We don't ever want to pray outside of His will in any way. We know we are called to Life Action Ministries and while we are very anxious to get there, this is not His time apparently. Maybe because of Clara, maybe not, but it doesn't matter. We know He will get us there when He is ready. We have been praying about some financial concerns and we have great faith that He provides, but in some cases, that has not been His timing either. So, when and if you remember the Bryant family in prayer, please just pray His will. Honestly, we are tired and we are spent. We are hanging on to Him with every ounce that is left within us. We love Him SO very much and we know He is all-sufficient. His Grace is plentiful and He loves us. He has us in the palm of His hand. We are thankful for the many areas He has provided. We are thankful for wonderful friends and family who love us and pray for us...we love you, too! We are thankful for the Godly people that have been obedient to God's calling to support our ministry, in whatever way He has called you to do so. Thank You!! Mostly, we are thankful for JESUS and the CHRISTmas Season that was always meant to celebrate His birth.
That is all for now. We love you all!!
Blessings!
Jeannie
Clara has a mitochondrial myopathy (muscle disease). While we do not have the "specifics", as the genetic testing is not back, we have enough information for her neurologist to give her that diagnosis. I could go into details, but really, I just don't have the energy today. We do have a regimen of supplements that we are to start with her immediately. One is called Carnitor, to increase her levels of Carnitine and the other one is called CoQ10. Carnitor is covered with a prescription and the CoQ10 usually is not. There is only one brand she can take and they have put her on a high dosage. We are praying this will help her with her muscle pain and fatigue. We are also paying close attention for signs of blood sugar problems and ketones in her urine. These are VERY normal for mito kids. Their little bodies are just not efficient at making energy.
I believe there are blessings to be found in every situation, and without a doubt, so many things to be thankful for. I also believe God puts people in our lives for a reason. One of the biggest blessings right now is a relationship with a dear friend who has a son with degenerative diseases. It has been so great to talk with a Mom who understands the pain in my heart, something I never would have understood if I were not dealing with this. Another blessing is someone who I have not even met, yet, but have been put into contact with by a sweet college friend. This Mom has 5 children and a husband with mito diseases. I spoke with her on the phone last night for 5 hours. Those of you who know me KNOW I am not a phone talker, but I can tell you that the time flew by while my pencil flew all over my paper. Our doctors are so great at giving us technical information, but not always so great at telling how to manage the day-to-day. There is so much to be learned form experience. As we spoke, so many light bulbs went off for me. There have been so many things in her life that I keep thinking have to add up to something but was always told "no." Well...they do and they are all common things for mito kids: throwing up undigested food 24-48 hours after eating it, drooling, big heads, sugar cravings, eating issues at birth, crankiness, and the list goes on. And while no two people have the "same" mito disease, there can definitely be similarities. Her kids and Clara have many things in common. I feel like I am now a few steps ahead on understanding how to care for her after our talk. Thank You, Lord! There are no "formulas" and mito is not predictable, but I am armed with some knowledge, and that is good. On the flip-side of that coin, I have a little more knowledge, so now I have a lot more questions...this is going to be a process, for sure. It's a funny thing. The more I learn, the more I don't' know.
I feel, sometimes, like I am draining everyone asking for prayers for our family. I do believe that is what believers are supposed to do...we want to pray for you, too!! We do covet your prayers for Clara. We are still believing she can be healed completely. In the meantime, please pray for me and Jeff to communicate and for our marriage to stay strong as we juggle all of this "life stuff". More than anything, we want God's will. We have specific things we pray for, but right now, it is obvious He has His own timing. We don't ever want to pray outside of His will in any way. We know we are called to Life Action Ministries and while we are very anxious to get there, this is not His time apparently. Maybe because of Clara, maybe not, but it doesn't matter. We know He will get us there when He is ready. We have been praying about some financial concerns and we have great faith that He provides, but in some cases, that has not been His timing either. So, when and if you remember the Bryant family in prayer, please just pray His will. Honestly, we are tired and we are spent. We are hanging on to Him with every ounce that is left within us. We love Him SO very much and we know He is all-sufficient. His Grace is plentiful and He loves us. He has us in the palm of His hand. We are thankful for the many areas He has provided. We are thankful for wonderful friends and family who love us and pray for us...we love you, too! We are thankful for the Godly people that have been obedient to God's calling to support our ministry, in whatever way He has called you to do so. Thank You!! Mostly, we are thankful for JESUS and the CHRISTmas Season that was always meant to celebrate His birth.
That is all for now. We love you all!!
Blessings!
Jeannie
Sunday, November 29, 2009
Failed Attempt
Hi Everyone,
I hope you all had a wonderful Thanksgiving and a blessed time with friends and family this week! We certainly did, which is why I am delayed giving you all an update on Clara's neurologist visit. This was a highly anticipated visit, as he was supposed to translate her test results for us. However, once we arrived, we discovered that, for whatever reason, he had not received the results on the same day we had. Needless to say this was VERY FRUSTRATING! I was not upset with him...it wasn't his fault. He asked me if I could tell him what it said, but I quickly reminded him that my degree was in music and not biochemistry. I still have not received the results from the genetic testing. Furthermore, the report did state that they (the neurogeneticist) would be seeking permission to do further genetic testing on the piece of muscle they took, and Dr. Berenson said he had not received that request. I know they can only keep the muscle alive for so long, so we are praying they will not have to do another biopsy. I forwarded the results to Dr. Berenson and he said he would receive them on Monday, review them, and then give me a call on Tuesday or Wednesday. Apparently, nothing like this has ever happened. Of course, it would be us who got to experience it first. :-)
I did ask him about Clara's drooling. If you have ever been around her you may have noticed that she drools a lot. I am forever wiping her chin off. He said that it was just part of the other we are dealing with. She has facial hypotonia (weakness) and when her muscles get tired, she drools. The GOOD NEWS: Her reflexes were PERFECT!!
Please continue to pray that we would get a diagnosis soon so we will know how to help our sweet girl and get her out of pain. I am also praying for a balance right now between her and the others. Clara wants to be held a lot, and while I certainly want to hold her and comfort her (I can't imagine being in pain all the time), there are so many times I am holding her and longing to hold Megan or spend time with the other two. There is only one of me and I am praying the Lord will give me discernment and wisdom to be a good mother to all four of them, leaving no one feeling left behind. I don't want Clara and her condition to ever be a source of resentment for the other three girls.
I pray you are all having a wonderful time preparing for Christmas! What a glorious season of the year as we celebrate the coming of our Savior!
Blessings to you all!
Jeannie
I hope you all had a wonderful Thanksgiving and a blessed time with friends and family this week! We certainly did, which is why I am delayed giving you all an update on Clara's neurologist visit. This was a highly anticipated visit, as he was supposed to translate her test results for us. However, once we arrived, we discovered that, for whatever reason, he had not received the results on the same day we had. Needless to say this was VERY FRUSTRATING! I was not upset with him...it wasn't his fault. He asked me if I could tell him what it said, but I quickly reminded him that my degree was in music and not biochemistry. I still have not received the results from the genetic testing. Furthermore, the report did state that they (the neurogeneticist) would be seeking permission to do further genetic testing on the piece of muscle they took, and Dr. Berenson said he had not received that request. I know they can only keep the muscle alive for so long, so we are praying they will not have to do another biopsy. I forwarded the results to Dr. Berenson and he said he would receive them on Monday, review them, and then give me a call on Tuesday or Wednesday. Apparently, nothing like this has ever happened. Of course, it would be us who got to experience it first. :-)
I did ask him about Clara's drooling. If you have ever been around her you may have noticed that she drools a lot. I am forever wiping her chin off. He said that it was just part of the other we are dealing with. She has facial hypotonia (weakness) and when her muscles get tired, she drools. The GOOD NEWS: Her reflexes were PERFECT!!
Please continue to pray that we would get a diagnosis soon so we will know how to help our sweet girl and get her out of pain. I am also praying for a balance right now between her and the others. Clara wants to be held a lot, and while I certainly want to hold her and comfort her (I can't imagine being in pain all the time), there are so many times I am holding her and longing to hold Megan or spend time with the other two. There is only one of me and I am praying the Lord will give me discernment and wisdom to be a good mother to all four of them, leaving no one feeling left behind. I don't want Clara and her condition to ever be a source of resentment for the other three girls.
I pray you are all having a wonderful time preparing for Christmas! What a glorious season of the year as we celebrate the coming of our Savior!
Blessings to you all!
Jeannie
Thursday, November 19, 2009
Papa's Pride and Joy
This past weekend, we went to visit my parents. Jan Brett, one of my most favorite children's authors/illustrators was in Newnan and I was dying to meet her! (I will post those pics soon!). While there, we couldn't resist a photo op with my Dad's 1963 Chevy pick-up truck that he just remodeled. Here are our Ga Dawgs!
They are not in the right order because I am having a really hard time with pictures on my blog. Robyn...HEEELLLP!!
Megan and Clara in the front seat together.
The truck. So pretty I am almost afraid to touch it!
Future cheerleaders? Only if the uniform is as modest as what they are wearing in this picture. :-)
Hangin' out on the tailgate. We can't call it "tail-gating"... There's no food!!
They are not in the right order because I am having a really hard time with pictures on my blog. Robyn...HEEELLLP!!
Megan and Clara in the front seat together.
The truck. So pretty I am almost afraid to touch it!
Future cheerleaders? Only if the uniform is as modest as what they are wearing in this picture. :-)
Hangin' out on the tailgate. We can't call it "tail-gating"... There's no food!!Have a blessed day!
Love,
Jeannie
Thursday, November 12, 2009
A Small Bit of Encouragement
I have to say that I absolutely adore out pediatrician. I have always felt that she, and her partner, really care about our family and they are always so willing to talk to us about anything! They have a very special way of putting my fears to rest, not to mention, I am eternally grateful for the doctors to whom she has pointed the way. They both know our family without looking at our charts, and that's nice.
Well, today I had to take Megan in for a wicked cough that, thankfully for the moment, is just a cold. I was a little bummed because Dr. Aldridge, our regular pediatrician, has the day off today, so we had to see the "new" doctor who is working part-time there now. She was wonderful and thorough, but without the personal touch, of course. She just met us. After we were through, though, Dr. Garrard, the other pediatrician popped in "just to see how things were going". I gave him an update on all the tests and shared with him my fears in light of Clara's abnormal reflexes at her neurologist visit back in August. He said that, typically, if reflexes are a sign of degeneration, they are "hypo" instead of "hyper". Hers were very "hyper". Coupled with the fact that she is making great progress in physical therapy, he said those were very good indicators that her disease is not progressive. For now that makes me feel much better. Just thought I would share. :-)
Blessings!
Well, today I had to take Megan in for a wicked cough that, thankfully for the moment, is just a cold. I was a little bummed because Dr. Aldridge, our regular pediatrician, has the day off today, so we had to see the "new" doctor who is working part-time there now. She was wonderful and thorough, but without the personal touch, of course. She just met us. After we were through, though, Dr. Garrard, the other pediatrician popped in "just to see how things were going". I gave him an update on all the tests and shared with him my fears in light of Clara's abnormal reflexes at her neurologist visit back in August. He said that, typically, if reflexes are a sign of degeneration, they are "hypo" instead of "hyper". Hers were very "hyper". Coupled with the fact that she is making great progress in physical therapy, he said those were very good indicators that her disease is not progressive. For now that makes me feel much better. Just thought I would share. :-)
Blessings!
Created in His Image
About a month ago, Jeff had a week off from work and some friends offered to let us use their camper, so we were off to a much-needed vacation. Mentally, we were all pretty exhausted and in definite need of some family time. It rained most of the time we were there, but on one clear morning, I went outside with my coffee to sit by the fire that my strapping husband had just built. ;-) As I sat there, I couldn't help but notice one of the most interesting trees I have ever seen. Yes...I said "tree". It was all gnarly and crooked where it had, very obviously, had to struggle its entire life to get light from the sun. At that very moment, I felt a lot like that tree...crooked a gnarly from having to struggle my entire life for just a glimpse of light from the Son. Right beside it was an identical tree, except it was as straight and beautiful as any I have ever seen. I thought, "Just figures. Of course that tree that is like me is standing right beside the perfect tree...a tree that has never had to struggle, that has never known the struggle of being overweight or had struggle to make ends meet, or never known the pain of having a child that has problems you can't fix. Not to mention, that 'perfect' tree has never known the pain of its parents' divorce, had to go without things it needed, was never neglected or hungry as a child, never knew abuse, and never knew the pain of being abandoned by a mother. It just figures....story of my life. God has always brought the most perfect people into my life to stand right beside me. That must be exactly what it looks like in His eyes." (Did I mention I was in need of a break?) The longer I sat there and pondered this tree, God began to really work in my heart. First, He showed me some roots of bitterness that had really taken root in my heart (I know you are surprised by this) and showed me some areas that I had never given thanks for. Actually, for the past few months I have felt totally abandoned....waiting for test results, waiting for our house to sell, struggling to take care of the many things on my plate....Where are You??? God was right. Where was my gratitude? Gratitude for still being here, close to Clara's doctors, making it very easy to get her the help she needs right now. Gratitude for four beautiful girls that bring so much joy to my heart and a husband who, really, couldn't be much better, and truly, as heavy as my heart has been about Clara, He has protected her from so much. Gratitude for a family that loves me, a wonderful woman who stepped in to be my Mom when I was 13 years old, and a church family that I love so dearly. Gratitude for our calling into a ministry we are passionate about and love....the list goes on and on. So, as I sat there pondering this tree, God really used this time to soften my heart. All at once, it hit me. That perfect tree didn't represent other people at all. It represented the One who came to earth, firmly planted in the soil of our Heavenly Father and never struggled to see His light, because He never wavered, never sinned, and well, really, He IS the Light Himself. That crooked, gnarly tree represents us all....struggling to get to the light, but still standing. But what a beautiful picture of what it means to be created in His image, because even with all that crookedness, that tree was still beautiful, and had it had a perfect life, would have looked just like the tree beside it...but I don't know anyone who has had a perfect life. That's why we need Grace, and Grace is given so abundantly. I know that sounds like a lot of thinking for one tree, but why wouldn't God use something from his wonderful creation to, so gently, speak to me the very way I needed to be spoken to? He really is So very good!
Have a BLESSED day!!
Thursday, November 5, 2009
What We Think We Know, So Far
The good news is, the reports are in, at least most of them (we are still waiting on the genetic testing). The bad news is, they are written in "genius-ese". I am so deeply thankful for so many of my family and friends who have been praying daily for our sweet Clara, and it is for this reason that I am going to go ahead and post what little we know. I was going to wait until I had all the facts, but I have promised to keep you all up-to-date....so here goes!
We received the reports in a secure e-mail attachment on Tuesday, late in the afternoon. As we suspected, it is a lot to digest. There were 22 attachments, but the first one said, "Summary", so we opened that one first. I had to read it three times (all 18 pages of it) for anything to make sense. I called my mother-in-law, the Nurse Practitioner, and Dr. Aldridge, our Pediatrician, right away. The problem is that this stuff is like the rocket science of medicine. While individual reports may make sense, putting the pieces together is not so easy. Any of this could change once we meet with the neurogeneticist again, but for now, it looks like Clara does have a Mitochondrial Disease, although it looks like they are recommending further testing to narrow down which one she has. That group of diseases is VERY broad. Her body seems to stay in a state of ketosis, which is the state of a runner's body after a marathon. That alone would explain her pain and fatigue. There were many warnings about children with these diseases and keeping them free of viral and bacterial infections. Apparently, neurological problems can be triggered if they are sick...especially with fever, and the letter said that if she got sick, even with a minor illness, she may have to be hospitalized for monitoring. Thankfully, we are rarely sick; I can't remember the last time she had a fever. That alone makes me so thankful God called us to homeschool. There was a LOOOONG list of medicines she cannot take. While I am trying not to get too worked up about anything, especially since I am not absolutely sure about most of this, there was one thing that really scared me. Many of you remember my post about the neurologist visit we had two weeks after her biopsy where her reflexes were abnormal. There was a part of the summary letter that explained mitochondrial diseases and it talked about the way they affect the body and how these disease attack systems of the body. The one attacked most commonly is the nervous system. Once again....sick at my stomach. I can't go on too much here without crying, but please keep praying. She is making such great progress in physical therapy right now, I just have to believe this is all going to be okay.
What I DO know is that God is still the Great Physician and he knew Clara before one of her days came to be. He has her in His hand and, as hard as it is for me to fathom, He loves her more than I do and He has a perfect plan for her sweet little life. I believe with all my heart that He sent her here for a reason and I can't wait to see how He uses her! I also know that all things work together for good to those who love the Lord. My prayer is that He would use this for HIS glory. We continue to covet your prayers. We have an appointment with her neurologist the day before Thanksgiving (I am trying to get that moved up) and I need to contact the neurogeneticist's office today to set something up . While they may be the ones who understand all of this here on earth, God already knows...He didn't need a biopsy to show him. None of this has surprised Him at all.
Please continue to pray for COMPLETE HEALING for Clara and and for wisdom for us as we continue through this process. There is still so much we don't know. Thankfully, she doesn't seem to be in as much pain lately, but she has been very fatigued. Thank you for your love and concern. We will post more as we know it.
****UPDATE****
We have a friend who is a biochemist who took a look at the report. He understood it (it's all biochemistry) and basically, he just said that her enzymes are mutating, but without the genetic reports, we don't know why. Apparently, that is the simple version. :-) I am so thankful for the people God has put in my life! Basically, so far, it seems everything else I wrote and understand is pretty much accurate. Also, there is no point in scheduling these appointments without the genetic testing, and so, we wait....again.
****
We Love You All!
Jeannie
We received the reports in a secure e-mail attachment on Tuesday, late in the afternoon. As we suspected, it is a lot to digest. There were 22 attachments, but the first one said, "Summary", so we opened that one first. I had to read it three times (all 18 pages of it) for anything to make sense. I called my mother-in-law, the Nurse Practitioner, and Dr. Aldridge, our Pediatrician, right away. The problem is that this stuff is like the rocket science of medicine. While individual reports may make sense, putting the pieces together is not so easy. Any of this could change once we meet with the neurogeneticist again, but for now, it looks like Clara does have a Mitochondrial Disease, although it looks like they are recommending further testing to narrow down which one she has. That group of diseases is VERY broad. Her body seems to stay in a state of ketosis, which is the state of a runner's body after a marathon. That alone would explain her pain and fatigue. There were many warnings about children with these diseases and keeping them free of viral and bacterial infections. Apparently, neurological problems can be triggered if they are sick...especially with fever, and the letter said that if she got sick, even with a minor illness, she may have to be hospitalized for monitoring. Thankfully, we are rarely sick; I can't remember the last time she had a fever. That alone makes me so thankful God called us to homeschool. There was a LOOOONG list of medicines she cannot take. While I am trying not to get too worked up about anything, especially since I am not absolutely sure about most of this, there was one thing that really scared me. Many of you remember my post about the neurologist visit we had two weeks after her biopsy where her reflexes were abnormal. There was a part of the summary letter that explained mitochondrial diseases and it talked about the way they affect the body and how these disease attack systems of the body. The one attacked most commonly is the nervous system. Once again....sick at my stomach. I can't go on too much here without crying, but please keep praying. She is making such great progress in physical therapy right now, I just have to believe this is all going to be okay.
What I DO know is that God is still the Great Physician and he knew Clara before one of her days came to be. He has her in His hand and, as hard as it is for me to fathom, He loves her more than I do and He has a perfect plan for her sweet little life. I believe with all my heart that He sent her here for a reason and I can't wait to see how He uses her! I also know that all things work together for good to those who love the Lord. My prayer is that He would use this for HIS glory. We continue to covet your prayers. We have an appointment with her neurologist the day before Thanksgiving (I am trying to get that moved up) and I need to contact the neurogeneticist's office today to set something up . While they may be the ones who understand all of this here on earth, God already knows...He didn't need a biopsy to show him. None of this has surprised Him at all.
Please continue to pray for COMPLETE HEALING for Clara and and for wisdom for us as we continue through this process. There is still so much we don't know. Thankfully, she doesn't seem to be in as much pain lately, but she has been very fatigued. Thank you for your love and concern. We will post more as we know it.
****UPDATE****
We have a friend who is a biochemist who took a look at the report. He understood it (it's all biochemistry) and basically, he just said that her enzymes are mutating, but without the genetic reports, we don't know why. Apparently, that is the simple version. :-) I am so thankful for the people God has put in my life! Basically, so far, it seems everything else I wrote and understand is pretty much accurate. Also, there is no point in scheduling these appointments without the genetic testing, and so, we wait....again.
****
We Love You All!
Jeannie
Friday, October 2, 2009
Hippo for Clara
Over the last two years, one of the main treatments that has been recommended for Clara over and over has been hippotherapy. This is where they have a really big hippopotamus chase...no, no, no. I am just kidding. :-) In all seriousness, the word hippotherapy is derived from a Greek word'"hippos", meaning horse, and put with therapy..well, literally, therapy with the aid of a horse. A horse's movement in the pelvis mimics that of a human, almost exactly. That movement is especially helpful to strengthen the muscles in the pelvic region of a human, which is where most of Clara's weakness is. So, we have been trying for about a year now to get this all lined up. It has been a matter of unreturned phone calls, no therapy in the summer because of the heat, and then more recently, we wondered if it was worth it to pursue it, knowing we might be leaving soon. We took it to the Lord in prayer, praying that He would close all doors if this was not His will for Clara, but at the same time, opening them wide open if it was, in fact, His will. The very next morning, I received a return phone call from about 4 months ago regarding setting up an evaluation. If that isn't wide open, I don't know what is. :-)
The evaluation has multiple purposes. The first thing they have to determine is if Clara is a good candidate for this type of therapy. Once this is decided, they have to decide which horse will be best suited to work her appropriate muscles. Just like people, each horse has a different gait, targeting different muscles in different ways. Additionally, since this therapy will work her muscles constantly, with nor breaks between "activities", they usually put the "easiest" horse with beginner patients. They told me not to be surprised if she can only last for about ten minutes at first.Needless to say, this has all been very fascinating for me to learn!
Her evaluation was today. I prayed so hard that all would go well. It was almost funny to watch it unfold. From the minute Ms. Wendy (the therapist) walked in the door, it was almost as if Clara flipped the "time to show-out for another doctor" switch. As always, she did things I have never seen her do while "performing" for this new audience. :-) Of course her sidekick, Megan, was right there with her. I wish I had a video camera! All in all, it went well! She has been approved for hippotherapy and Ms. Wendy has a horse in mind for her already. Now we just have to get it all lined up with the ranch. Thankfully the ranch is only about 30 minutes away in Watkinsville. (another answered prayer!) This therapy will be once a week, in addition to her regular physical therapy with Ms. Lee. We are finally having two sessions per week...just what her neurologist wanted. It was such a blessing seeing how far she has come during her evaluation! She is doing so many things she couldn't do a year ago...or even 4 months ago. We see her getting stronger, which is a GREAT sign! We have also joked that the reason God gave us Megan was for Clara...she is the best PT EVER!! Clara has to keep up with her!
As always, money will be an issue, but we are believing God for His provision. Insurance should cover the sessions...at least most of them...(we might cut it close towards the end of the year). However, the barn requires a $25 per week fee to "feed the horses" that insurance will not cover. Please pray with us that God would provide for this. I don't think we can cut our budget much tighter, but we have seen Him stretch it many times! We know he can!! I am also doing some sewing projects and such to bring in a little extra income. Please pray that God would multiply my time so I can get it all in!
We are still waiting for biopsy results. I talked with her former physical therapist the other night and she said not to be surprised if it took more like 10-12 weeks. Either way, we are STILL waiting! Either way, God is GOOD all the time, and ALL the time, God is GOOD!!
Friends, thank you for your prayers and encouragement. Your love and support has meant more to us than you will ever know!
Have a great day!
Love,
Jeannie
The evaluation has multiple purposes. The first thing they have to determine is if Clara is a good candidate for this type of therapy. Once this is decided, they have to decide which horse will be best suited to work her appropriate muscles. Just like people, each horse has a different gait, targeting different muscles in different ways. Additionally, since this therapy will work her muscles constantly, with nor breaks between "activities", they usually put the "easiest" horse with beginner patients. They told me not to be surprised if she can only last for about ten minutes at first.Needless to say, this has all been very fascinating for me to learn!
Her evaluation was today. I prayed so hard that all would go well. It was almost funny to watch it unfold. From the minute Ms. Wendy (the therapist) walked in the door, it was almost as if Clara flipped the "time to show-out for another doctor" switch. As always, she did things I have never seen her do while "performing" for this new audience. :-) Of course her sidekick, Megan, was right there with her. I wish I had a video camera! All in all, it went well! She has been approved for hippotherapy and Ms. Wendy has a horse in mind for her already. Now we just have to get it all lined up with the ranch. Thankfully the ranch is only about 30 minutes away in Watkinsville. (another answered prayer!) This therapy will be once a week, in addition to her regular physical therapy with Ms. Lee. We are finally having two sessions per week...just what her neurologist wanted. It was such a blessing seeing how far she has come during her evaluation! She is doing so many things she couldn't do a year ago...or even 4 months ago. We see her getting stronger, which is a GREAT sign! We have also joked that the reason God gave us Megan was for Clara...she is the best PT EVER!! Clara has to keep up with her!
As always, money will be an issue, but we are believing God for His provision. Insurance should cover the sessions...at least most of them...(we might cut it close towards the end of the year). However, the barn requires a $25 per week fee to "feed the horses" that insurance will not cover. Please pray with us that God would provide for this. I don't think we can cut our budget much tighter, but we have seen Him stretch it many times! We know he can!! I am also doing some sewing projects and such to bring in a little extra income. Please pray that God would multiply my time so I can get it all in!
We are still waiting for biopsy results. I talked with her former physical therapist the other night and she said not to be surprised if it took more like 10-12 weeks. Either way, we are STILL waiting! Either way, God is GOOD all the time, and ALL the time, God is GOOD!!
Friends, thank you for your prayers and encouragement. Your love and support has meant more to us than you will ever know!
Have a great day!
Love,
Jeannie
Monday, September 28, 2009
Updates and Blessings!
Hi Everyone!
It has been a while since I posted an update here and so many of you have asked "How are things going with....?" Truly, there are so many ways to fill in those blanks right now it almost makes me dizzy! I thought this would be the easiest way to update everyone on everything. :-)
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Clara-We still have no word yet on the results of her biopsy. This Wednesday will be 7 weeks since she had it, and they said it would be 6-8 weeks, so we are hoping for word any day. Thank you for all of your prayers up to this point! Please continue to pray for speedy results and for healing of our sweet girl.
She is doing very well right now! She has had less pain than ever in the last month or so, and we think this is a good sign! She started with a new physical therapist (Ms. Susan got married and moved away) and she is wonderful. Her name is Ms. Lee and Clara already calls her "Lee-Lee", which I think is hysterical. :-) We are meeting with another physical therapist on Thursday to see if we can get her qualified for HIPPO therapy, which uses horses as a tool instead of balls, etc. We have been trying to get her going on this for about a year now, so please pray all goes well and that God would provide the funds needed. Insurance covers all of the therapy fee, but we have to pay $25 a session to "feed the horses" if she is accepted into the program. Right now, that might as well be $1000, but we know God will provide if that is His will for her life.
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Life Action- We are still as excited as ever about our ministry! As frustrated as we get that we are not in Michigan, we also know that God's timing is perfect and that He has us here for a reason. Right now, we are thankful to be near Clara's doctors and depending on what treatment is prescribed for her upon learning the results of the biopsy, we may need to raise more support before we go. For that reason, I am thankful we are still here. It would be VERY hard on our budget to try to pay for expensive treatment on what we have already raised to live on-a very modest yearly salary. We have not had many people look at our house recently, so we continue to pray that God's will would be done and that our house would sell in HIS time. :-) We did show the house last Sunday for the first time since July. The market is still slow, but God is most definitely still God!
Some months ago, we talked with some of our friends about the remote possibility that we could move to MI without selling our house first. Since many of you have asked about that, I thought I would go ahead and address that, as well. There are some families already in Michigan, waiting for their homes to sell. There is very limited space at the camp for these families. If God led us in that direction, we would surely obey, but for now, that does not appear to be His plan. Additionally, the salary we have raised for ministry is less than what we currently live on. There would be no way we could maintain our current house payment, living expenses, and Clara's medical bills on that income. We are anxious to get there, but would never want to go ahead outside of God's timing.
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We have a new nephew!! Diana had her baby on Friday night. She gave birth to a GORGEOUS 9 lb. 3 oz. baby boy named Noah. He is absolutely perfect and such a gift! THANK YOU LORD!!
About 37 minutes old
All cleaned up....what an angel!
A very excited Aunt Jeannie!
I guess that is all, for now. Until next time.....
Jeannie
Monday, September 14, 2009
Real Little Ladies
The last few weeks at the Bryant house have been busy ones! We are now in our fourth week of school, and for the last two weeks, the babies have been potty training. I must admit, this has never been my favorite parenting task, but nonetheless, it must be done! We waited a little longer to start with Clara. She didn't start walking until right before her second birthday, and I didn't see much point in trying to train her when she had trouble getting to the potty. Now that she is three and Megan is two, I decided to train them both together. It has been an adventure, to be sure. Clara is officially potty trained and Megan, well, she is going to take a little more time. She will go if I remind her, but she does not tell me she has to go. She gives many signs, and if I catch on to them we can usually make it in time. But we will not be going in public in panties with her anytime soon. :-) The funniest part of the whole experience has been observing what little ladies they are, even at this young age. They NEVER go alone! If one goes, the other one ALWAYS has to go, even if just to read a book on the potty, cheer the other on, or helpfully hand the other one toilet paper. :-) When we first started, we had a little potty throne that plays music when you "go" and a then we put a little seat on the big potty. As it turns out, they both fought over the big potty with the little "Elmo seat" on it. Last week, we bit the bullet and bought another "Elmo seat" to go on the toilet in our room. So now, there is no more fighting over the big potty, but now they are always disappointed that they can't go in the same room together. Hmmmm...they just can't be pleased. Like I said.....real little ladies!
Have a wonderful day!!
Many Blessings!
Jeannie
Have a wonderful day!!
Many Blessings!
Jeannie
Wednesday, August 26, 2009
A Disappointing Visit with the Neurologist
Clara had her three month visit with Dr.Berenson, her neurologist, today. Each time we go, it is usually the same. He checks her over, discusses our next step, and we schedule our next three month appointment. Each visit we are reassured because she has not taken any steps backwards and seems to improve every time. I expected no different today. She was as happy as she always is to see him....I think she has a crush on him. :-) But when he started checking her over, his face totally changed. He said her reflexes were very abnormal....too big and too fast. (He used a big word for that, but I can't remember it). When I asked him what that meant, he said we were dealing with some sort of spinal dysfunction now. He asked if we had taken her for an MRI recently (which we have...6 months ago), and got really serious for a few minutes. All he could say was that we just need to wait on the results of her biopsy before we speculate on anything. I asked him if he thought this meant her disease is progressive, and he said, "not necessarily". He said that a year ago, he was not convinced we were dealing with a muscle disease, and now he is convinced because she is weak. He still thinks it will be a mild case, but beyond that, he can't say much more until we know for sure. He does feel confident we will get a diagnosis, so now we are just left waiting.
We are so thankful for the doctors God has given us. She is truly in some of the best hands in the country. We are so thankful for the bright and determined personality God has given her. You can't help but smile when she's around. Please pray with us, thanking God first for His many blessings (...giving thanks in all things..), and asking that
-she would not have any more pain
-we would get a diagnosis soon.
-that whatever disease she has would not be progressive and that treatment would be available.
Thank you for your concern and your prayers!
Much Love,
Jeannie
We are so thankful for the doctors God has given us. She is truly in some of the best hands in the country. We are so thankful for the bright and determined personality God has given her. You can't help but smile when she's around. Please pray with us, thanking God first for His many blessings (...giving thanks in all things..), and asking that
-she would not have any more pain
-we would get a diagnosis soon.
-that whatever disease she has would not be progressive and that treatment would be available.
Thank you for your concern and your prayers!
Much Love,
Jeannie
Sunday, August 23, 2009
Break My Plans
Jeff has always teased me about being such a "planner". I LUUUVVV to plan. I plan everything. There is always something going on in my head. I plan what to get the girls for Christmas and birthdays 7-8 months ahead of time. If I am throwing a shower, I usually know the menu and theme 2 weeks BEFORE I even ask the person if they would like for me to do that. When we invite someone over for dinner, I am automatically planning the menu, what dishes we will use, where everyone will sit.... I plan grocery shopping trips. I plan to run errands. I plan how I am going to fix the girls' hair for upcoming special occasions....you get the picture. As much I love to plan, life doesn't always fall into a plan.
About two weeks ago,I attended a conference for Children's Choir Leadership. Usually I really love these conferences and look forward to them. However, upon arriving at this one, I must confess, I really did not want to be there. Life was weighing so heavy on me, I just wanted to go home and crawl under my covers. Clara's surgery was quickly approaching and I was still not sure how we were going to come up with the enormous amount of money they wanted up-front. I had some friends going through some hard times, and while I would never have NOT been there for them, it had really taken a toll on me physically, emotionally, and spiritually. The situation with our house had become so frustrating I was beginning to doubt it all. I never planned to have a daughter with a muscle disorder. I never planned for my friends to go through such a hard time, and I certainly never planned for it to take this long for us to get to Michigan. I was struggling with God. Why would He call us to this ministry we love so very much and are so passionate about, provide the means to go, and then keep us here for this long? Why did the market have to crash just as we were planning to sell? Why didn't He lay it on our hearts to sell in the beginning of our journey like He had for other people?
On the first evening of our conference, there was a worship service. I must confess, I really thought about skipping out and just going to the hotel. I just didn't feel like dealing with it. However, God, in His infinite wisdom, made sure I had already made arrangements to ride to the hotel with a friend and she was going to the service, so I was stuck. As I walked into the service, I slid into a very back pew, and what followed was amazing. The conference was for all aspects of music ministry and the worship service was a sampling of all of that. Camp Kirkland was there with an orchestra; there was a big choir; an artist painted a beautiful depiction of the Crucifixion of Christ as the music played; we sang hymns; we sang praise and worship music; there was drama, and on and on it went. But the most remarkable thing was a group that came to sing. I had never heard of them, but I love to hear a group of men singing a capella. They were called This Hope. I was already caught up in their music when they began to tell an amazing story. The story was about a man named Nicolae Moldoveanu they met in Romania on a recent mission trip. He was a hymn writer during the 1950's when communism was at an all time high in his country. The government told him that if he didn't stop writing hymns, they would put him in prison. Well, he didn't, and they did, and even while in prison, he wrote over 360 hymns! :-) Isn't God great? At the time of their meeting, he had volumes upon volumes of hymns on his shelves that are still being sung there to this day. He never planned for the government to interfere with his calling to write for the Lord, and he surely didn't plan to leave his wife and baby son to go to prison. But God was so faithful to him. He protected him and brought him back home safely. He even made sure he was able to continue to fulfill his calling while in the prison, in the worst of circumstances. This just really spoke to me. They wrote a song about him called "Break My Plans". While they sang, God reminded me of Jeremiah 29:11. "For I know the plans I have for you", says the Lord. A plan to prosper you and not to harm you and to give you a hope for the future. He didn't promise to let us in on His plan, but I take so much comfort in knowing that HE knows where I am going and He will be with me. That is one plan I do not need to make. Quite the opposite...I need to get out of His way!!! And so, right now, we are waiting. We are waiting on a diagnosis for our sweet Clara, but we know that whatever that diagnosis may be, God already knows and has her in His loving arms. We still know He has our perfect buyer. Who knows, maybe He has us here to raise more support for Clara's care, maybe He has other ministry for us here.....it doesn't matter. He has us here for a reason, and HE knows what it is, so I don't have to. Thank you, Lord!
I have posted the video here for you to enjoy, if you wish. I pray it speaks to you the way it did to me.
My prayer.
Break my plans.
Shape my heart.
Take my will to where You are.
Build my mind through Your Word,
Till all that I am lives to love you, Lord.
Many Blessings!
Jeannie
About two weeks ago,I attended a conference for Children's Choir Leadership. Usually I really love these conferences and look forward to them. However, upon arriving at this one, I must confess, I really did not want to be there. Life was weighing so heavy on me, I just wanted to go home and crawl under my covers. Clara's surgery was quickly approaching and I was still not sure how we were going to come up with the enormous amount of money they wanted up-front. I had some friends going through some hard times, and while I would never have NOT been there for them, it had really taken a toll on me physically, emotionally, and spiritually. The situation with our house had become so frustrating I was beginning to doubt it all. I never planned to have a daughter with a muscle disorder. I never planned for my friends to go through such a hard time, and I certainly never planned for it to take this long for us to get to Michigan. I was struggling with God. Why would He call us to this ministry we love so very much and are so passionate about, provide the means to go, and then keep us here for this long? Why did the market have to crash just as we were planning to sell? Why didn't He lay it on our hearts to sell in the beginning of our journey like He had for other people?
On the first evening of our conference, there was a worship service. I must confess, I really thought about skipping out and just going to the hotel. I just didn't feel like dealing with it. However, God, in His infinite wisdom, made sure I had already made arrangements to ride to the hotel with a friend and she was going to the service, so I was stuck. As I walked into the service, I slid into a very back pew, and what followed was amazing. The conference was for all aspects of music ministry and the worship service was a sampling of all of that. Camp Kirkland was there with an orchestra; there was a big choir; an artist painted a beautiful depiction of the Crucifixion of Christ as the music played; we sang hymns; we sang praise and worship music; there was drama, and on and on it went. But the most remarkable thing was a group that came to sing. I had never heard of them, but I love to hear a group of men singing a capella. They were called This Hope. I was already caught up in their music when they began to tell an amazing story. The story was about a man named Nicolae Moldoveanu they met in Romania on a recent mission trip. He was a hymn writer during the 1950's when communism was at an all time high in his country. The government told him that if he didn't stop writing hymns, they would put him in prison. Well, he didn't, and they did, and even while in prison, he wrote over 360 hymns! :-) Isn't God great? At the time of their meeting, he had volumes upon volumes of hymns on his shelves that are still being sung there to this day. He never planned for the government to interfere with his calling to write for the Lord, and he surely didn't plan to leave his wife and baby son to go to prison. But God was so faithful to him. He protected him and brought him back home safely. He even made sure he was able to continue to fulfill his calling while in the prison, in the worst of circumstances. This just really spoke to me. They wrote a song about him called "Break My Plans". While they sang, God reminded me of Jeremiah 29:11. "For I know the plans I have for you", says the Lord. A plan to prosper you and not to harm you and to give you a hope for the future. He didn't promise to let us in on His plan, but I take so much comfort in knowing that HE knows where I am going and He will be with me. That is one plan I do not need to make. Quite the opposite...I need to get out of His way!!! And so, right now, we are waiting. We are waiting on a diagnosis for our sweet Clara, but we know that whatever that diagnosis may be, God already knows and has her in His loving arms. We still know He has our perfect buyer. Who knows, maybe He has us here to raise more support for Clara's care, maybe He has other ministry for us here.....it doesn't matter. He has us here for a reason, and HE knows what it is, so I don't have to. Thank you, Lord!
I have posted the video here for you to enjoy, if you wish. I pray it speaks to you the way it did to me.
My prayer.
Break my plans.
Shape my heart.
Take my will to where You are.
Build my mind through Your Word,
Till all that I am lives to love you, Lord.
Many Blessings!
Jeannie
Friday, August 14, 2009
Clara's Procedure
Hi Everyone!
I am sorry I am just now updating our blog after Clara's procedure on Wednesday...it has been nuts since we have been home!
On Tuesday we went for her Resting Metabolic Rate test first. She was a champ! She had to sit inside a big, plastic bubble and breathe for 20 minutes without talking or moving around. They said that most of the time, they are not able to get this test accomplished with children her age. She did it, though! Once we explained to her what was happening, she did great.
Next, we went to the neurogeneticist. We had heard really great things about him, and they were true! He is one of two of his kind in the country..yes, that's right...the country! He came in and already knew Clara. He told us everything that has happened to her as of yet, and things we had likely experienced based on what was in her chart. He had spent some time studying her, for sure! He took a lot of time with us answering questions (we had a two hour appointment), and then was off to his lab to get things ready. On a funny side note, he did not look the way we expected. He looked like one of those guys in the comtemporary music lab at UGA. He had wild, long blond hair, a country-western shirt made from a 70's print, brown jeans, and boots. Pretty teeth, though!
On Wednesday, we had to be at the Pediatric Surgery Center by 7:45 a.m. Thankfully, we have some dear friends in Atlanta who allowed us to stay with them that night. As nervous as we were...no sleep for two nights...it couldn't have gone any better. They took great care of her. The procedure went without a hitch. They had to go deep for her muscle tissue sample, and also took a skin sample from the incision sight. She was really sore Wednesday and Thursday, but is doing really well today! We can take her bandage off next Wednesday.
Now the hard part. We wait. It will take 6-8 weeks to get results from Dr. Schoffner. In the meantime, we are praying for COMPLETE healing of our sweet girl. We believe that God is still the Great Physician. Would you believe that with us? We appreciate your prayers.
Please continue to pray for us over the next few weeks. We are praying for a quick recovery for Clara, patience as we wait for results and for our house to sell so we can move to Michigan.
Well, I must be off to the grocery store! I have not shopped in three weeks, and my children are very tired of eating "whatever I can find", not to mention, I need to get out for a little while. Eight days in Michigan and surgery can wear a Mom out! Many blessings to you all!!
Love,
Jeannie
I am sorry I am just now updating our blog after Clara's procedure on Wednesday...it has been nuts since we have been home!
On Tuesday we went for her Resting Metabolic Rate test first. She was a champ! She had to sit inside a big, plastic bubble and breathe for 20 minutes without talking or moving around. They said that most of the time, they are not able to get this test accomplished with children her age. She did it, though! Once we explained to her what was happening, she did great.
Next, we went to the neurogeneticist. We had heard really great things about him, and they were true! He is one of two of his kind in the country..yes, that's right...the country! He came in and already knew Clara. He told us everything that has happened to her as of yet, and things we had likely experienced based on what was in her chart. He had spent some time studying her, for sure! He took a lot of time with us answering questions (we had a two hour appointment), and then was off to his lab to get things ready. On a funny side note, he did not look the way we expected. He looked like one of those guys in the comtemporary music lab at UGA. He had wild, long blond hair, a country-western shirt made from a 70's print, brown jeans, and boots. Pretty teeth, though!
On Wednesday, we had to be at the Pediatric Surgery Center by 7:45 a.m. Thankfully, we have some dear friends in Atlanta who allowed us to stay with them that night. As nervous as we were...no sleep for two nights...it couldn't have gone any better. They took great care of her. The procedure went without a hitch. They had to go deep for her muscle tissue sample, and also took a skin sample from the incision sight. She was really sore Wednesday and Thursday, but is doing really well today! We can take her bandage off next Wednesday.
Now the hard part. We wait. It will take 6-8 weeks to get results from Dr. Schoffner. In the meantime, we are praying for COMPLETE healing of our sweet girl. We believe that God is still the Great Physician. Would you believe that with us? We appreciate your prayers.
Please continue to pray for us over the next few weeks. We are praying for a quick recovery for Clara, patience as we wait for results and for our house to sell so we can move to Michigan.
Well, I must be off to the grocery store! I have not shopped in three weeks, and my children are very tired of eating "whatever I can find", not to mention, I need to get out for a little while. Eight days in Michigan and surgery can wear a Mom out! Many blessings to you all!!
Love,
Jeannie
Friday, July 17, 2009
Update On Clara
Hi Everyone!
We just wanted to give you all a quick update on Clara and ask you to continue to pray. We have prayed for wisdom throughout this entire process, and I believe He has given it, just as He promises in James 1.
A few weeks ago, when we went back to the neurologist, he wanted us to take Clara to a pediatric orthopedist to rule out anything "bone related" that may contribute to her problem. I was a bit unsure, as we went to a pediatric orthopedist about a year ago, and it was a total waste of time and money. I was SO pleasantly surprised! He came very highly recommended, not just by our neurologist, but also from a friend at church. When we first got there, his PA spent a lot of time with her, and had us all laughing hysterically while he examined her. She then went to have x-rays. Three suckers and two stickers later, we saw the doctor. He was so thorough with his exam and with the information he gave me, not to mention plenty of time for me to ask questions....we could not have been more pleased. That in itself, was an answer to prayer! The short of it is that she has a tibial torsion (sp?), which means that her tibia bones are turned inward, making it look as if she is bow-legged, but she is not. That will heal itself by the time she is 7 or 8 years old. As far as her muscle weakness and pain, there is nothing bone related contributing to that. Because we have now ruled out nerve problems and bone problems, it has been recommended that we proceed with the muscle biopsy. They believe her problem falls under the category of "mitochondrial" diseases because of where her weaknesses are.
This week, I have spent a large part of my time on the phone with the neurogeneticists office and the surgeons office, in addition to filling out an 11 page medical history (that also required being on the phone with MANY relatives). We are now scheduled for our consultation on August 11, and her surgery is August 12th.
Please pray for:
1) Peace for Clara and a smooth surgery.
2) Answers to our questions (it will take 3 months to get our results).
3) That she will continue to gain strength in her body.
4) Smooth travel to and from Atlanta.
God is so good and continues to be so faithful to us!!!
Thank you, friends!
Jeff and Jeannie
We just wanted to give you all a quick update on Clara and ask you to continue to pray. We have prayed for wisdom throughout this entire process, and I believe He has given it, just as He promises in James 1.
A few weeks ago, when we went back to the neurologist, he wanted us to take Clara to a pediatric orthopedist to rule out anything "bone related" that may contribute to her problem. I was a bit unsure, as we went to a pediatric orthopedist about a year ago, and it was a total waste of time and money. I was SO pleasantly surprised! He came very highly recommended, not just by our neurologist, but also from a friend at church. When we first got there, his PA spent a lot of time with her, and had us all laughing hysterically while he examined her. She then went to have x-rays. Three suckers and two stickers later, we saw the doctor. He was so thorough with his exam and with the information he gave me, not to mention plenty of time for me to ask questions....we could not have been more pleased. That in itself, was an answer to prayer! The short of it is that she has a tibial torsion (sp?), which means that her tibia bones are turned inward, making it look as if she is bow-legged, but she is not. That will heal itself by the time she is 7 or 8 years old. As far as her muscle weakness and pain, there is nothing bone related contributing to that. Because we have now ruled out nerve problems and bone problems, it has been recommended that we proceed with the muscle biopsy. They believe her problem falls under the category of "mitochondrial" diseases because of where her weaknesses are.
This week, I have spent a large part of my time on the phone with the neurogeneticists office and the surgeons office, in addition to filling out an 11 page medical history (that also required being on the phone with MANY relatives). We are now scheduled for our consultation on August 11, and her surgery is August 12th.
Please pray for:
1) Peace for Clara and a smooth surgery.
2) Answers to our questions (it will take 3 months to get our results).
3) That she will continue to gain strength in her body.
4) Smooth travel to and from Atlanta.
God is so good and continues to be so faithful to us!!!
Thank you, friends!
Jeff and Jeannie
Friday, July 10, 2009
Ministry Comes in Many Forms
Hey Everyone!
As many of you know, we are currently raising support to join Life Action Ministries. We are still waiting on a little more support to come in, but the main thing we are waiting on is for our house to sell. Once it sells, we will be moving. It has been very challenging at times to wait patiently, knowing that God's timing is perfect, and that this was all His idea in the first place. :-) There is one song that has sort of gotten me through the waiting thus far. It is called "While I'm Waiting". I especially love the part that says, " I will worship while I'm waiting, I will love you while I'm waiting, I will serve you while I'm waiting". Those may not be exactly the words, but you get the idea. I have to remember that we are called to ministry. Period. Not ministry in Michigan...just ministry. All of us as Christians are. "Go and make disciples of every nation, baptizing them in the name of the Father, Son , and the Holy Spirit" Matthew 28 :19-20. We have been praying that God will give us opportunities right here while we wait, and He has. For example, I have had a number of opportunities to speak at meetings about Godly stewardship through menu planning and grocery shopping. Jeff and I have many opportunities in our church to share in music ministry, be it with tuba, flute, or voice. Jeff comes into contact daily with people who need the Lord. He has had a chance to build relationships and this has given him many opportunities to share. This morning I had special time with just the babies, as their older sisters are their grandparents, and that, too, is ministry! I can't think of a more important ministry right now than the family God has given me to minister to. And so, we are missionaries, but not just for ministry elsewhere. We continue to pray for opportunities right here at home to share what God is doing in our lives and share His love with others.
Also, we have some prayer needs that are heavy on our hearts right now. We ask you to please pray with us:
1. For those of you who know the Hortons, her mother had quadruple by-pass surgery this morning and had to be taken back into the OR tonight. When she called, they did not know why yet, so just pray for wisdom for the doctors and a complete healing for her mother-Betty Davis.
2. Another family in our church is having a very hard time. I cannot share any details, but the Lord will know who you are praying for, and they DESPERATELY need it!
3. Clara seemed to be in more pain today than she has in months. Please continue to pray for a diagnosis for her, but also, complete healing. It would only take a tiny touch from God's magnificent hand!
4. As always, please pray for our house to sell! Here's a picture so you will have a visual:
5. We want to know YOUR prayers needs, as well. Please feel free to e-mail them to JNJBryant@att.net and we will lift you up in prayers, and rejoice with you when those prayers are answered!
Have a great night!
Blessings!
Jeannie
Watercolor fun!!
Well, it all started out very innocently. The babies wanted to paint, and their big sisters, being the wonderful big sisters they are, obliged. They were so excited when they first started. Megan, who was experiencing this for the first time, kept saying, "I fainting, I fainting!!". They did really well, but I guess I let it go too long. Before we knew it, the babies were painting on their hands, and in Megan's case, her face. Emilie was doing who-knows-what, but managed to make a huge mess. And Alyssa, as usual, found science in the whole thing. She discovered that if you barely dip your paint-coated brush into the water , many different designs will appear. She also experimented with different color combos and different ways to dip the brush. I know....typical homeschooler. So anyway, since there are four and not two, I am able to laugh and thought you may be able to, as well! Enjoy!
Emilie doing whatever it is Emilie does...but it's always fun!
Alyssa trying out different color combos in her rinse water.
Megan, having way too much fun painting her hands ....
...and face. At least they are non-toxic. :-)
Clara was so proud of her pretty colors!
Hope you enjoyed!
Blessings!
Wednesday, July 8, 2009
A Spiritual Journey
Hi Everyone!
We had a good day today. "What romantic way did we spend our anniversary", you ask? We cleaned out the garage! :-) Romance at its finest. :-) When Emilie found out it was our anniversary today, she said, "And you spent it cleaning? Yuck!" Spoken like our truly romantic second-born with a severe dislike for cleaning. :-) However, for those of you who know us well, our garage has been an issue for us since we have owned a house....at least 12 years! One of my friends used to tell me it was the "bane of my existence". She was right. It seems that no matter how hard we clean the rest of our house, it never feels clean, because we know that lurking at far end of our house is a really large abyss full of junk. We liked to call memories, storage, things we might need later, ...the list goes on, but over time we have realized that it is just "stuff". Stuff we hold on to that just weighs us down. It is an ever-present weight on our shoulders. It has not only affected our quality of day-to-day life, but it has affected our self-esteem....always being ashamed for anyone to see our "mess". It has been a waste of time...anytime we get ready to look for something to walk out the door, it is always "in the garage". And now, if not taken care of, it is going to cost us a lot of money when we move. And so, as we prepare for our move, the Lord has been doing a work in our heart about what we really need. When we look at something, we ask, "Do we want to pay to move this?" I can honestly tell you that the more trips we make to Goodwill and the more stuff we throw in the trash, the better we feel about ourselves and this beautiful home God has entrusted to us.
As we cleaned, and cleaned, and cleaned, I couldn't help but think how that garage is so much like my heart. So many times, someone has wronged me or offended me. Other times I may be jealous of someone for the way I think they have been blessed more than me. There are even good things that hold on to too tightly...memories of my children. Every single article of clothing or toy they ever touched. If I get rid of it...let it go....I might lose a piece of their childhood! Or, things that people have given me that I hold dear and near. Words people have said...whether ugly or words seeking approval. Gradually these things start to take root in my heart., taking away my dependence on God. I can go about my day, looking like all is well, while meanwhile there is bitterness, jealousy, anger....among others gnawing away at me. The amazing part is, when it happens, it is so gradual, you never really realize it until it has totally taken over and robbed you of your quality of Christian life....most importantly, your relationship with the Lord. And so, as I threw away papers and got rid of items I no longer need, I asked the Lord to reveal to me the things that have taken root in my heart that I am not aware of. Sins that I need to ask forgiveness for or relationships that need to be mended. As each dirty, yellowed piece of paper was discarded, I asked him to reveal those things that I have allowed to come between me and Him, and ask for the forgiveness Jesus made possible on that old rugged cross. And so now, my prayer is that as we continue to finish up the work we have begun in the garage (because it will take more than one day to clean up), that He would be faithful to complete the work he has started in me. He does promise that, you know!
In closing, please be in prayer for our family. Pray that our house would sell quickly...and in His time, and that we can get the most pressing of Clara's medical needs met before we go. Also, please pray for a dear friend who is in the hospital tonight. I cannot give details, but God will know who you are praying for.
Have a blessed day!!
Jeannie
We had a good day today. "What romantic way did we spend our anniversary", you ask? We cleaned out the garage! :-) Romance at its finest. :-) When Emilie found out it was our anniversary today, she said, "And you spent it cleaning? Yuck!" Spoken like our truly romantic second-born with a severe dislike for cleaning. :-) However, for those of you who know us well, our garage has been an issue for us since we have owned a house....at least 12 years! One of my friends used to tell me it was the "bane of my existence". She was right. It seems that no matter how hard we clean the rest of our house, it never feels clean, because we know that lurking at far end of our house is a really large abyss full of junk. We liked to call memories, storage, things we might need later, ...the list goes on, but over time we have realized that it is just "stuff". Stuff we hold on to that just weighs us down. It is an ever-present weight on our shoulders. It has not only affected our quality of day-to-day life, but it has affected our self-esteem....always being ashamed for anyone to see our "mess". It has been a waste of time...anytime we get ready to look for something to walk out the door, it is always "in the garage". And now, if not taken care of, it is going to cost us a lot of money when we move. And so, as we prepare for our move, the Lord has been doing a work in our heart about what we really need. When we look at something, we ask, "Do we want to pay to move this?" I can honestly tell you that the more trips we make to Goodwill and the more stuff we throw in the trash, the better we feel about ourselves and this beautiful home God has entrusted to us.
As we cleaned, and cleaned, and cleaned, I couldn't help but think how that garage is so much like my heart. So many times, someone has wronged me or offended me. Other times I may be jealous of someone for the way I think they have been blessed more than me. There are even good things that hold on to too tightly...memories of my children. Every single article of clothing or toy they ever touched. If I get rid of it...let it go....I might lose a piece of their childhood! Or, things that people have given me that I hold dear and near. Words people have said...whether ugly or words seeking approval. Gradually these things start to take root in my heart., taking away my dependence on God. I can go about my day, looking like all is well, while meanwhile there is bitterness, jealousy, anger....among others gnawing away at me. The amazing part is, when it happens, it is so gradual, you never really realize it until it has totally taken over and robbed you of your quality of Christian life....most importantly, your relationship with the Lord. And so, as I threw away papers and got rid of items I no longer need, I asked the Lord to reveal to me the things that have taken root in my heart that I am not aware of. Sins that I need to ask forgiveness for or relationships that need to be mended. As each dirty, yellowed piece of paper was discarded, I asked him to reveal those things that I have allowed to come between me and Him, and ask for the forgiveness Jesus made possible on that old rugged cross. And so now, my prayer is that as we continue to finish up the work we have begun in the garage (because it will take more than one day to clean up), that He would be faithful to complete the work he has started in me. He does promise that, you know!
In closing, please be in prayer for our family. Pray that our house would sell quickly...and in His time, and that we can get the most pressing of Clara's medical needs met before we go. Also, please pray for a dear friend who is in the hospital tonight. I cannot give details, but God will know who you are praying for.
Have a blessed day!!
Jeannie
Our First Day With Our New Blog!!
Hi Everyone!! We are so excited to FINALLY have a blog! This will be such an easy way to keep you all up-to-date with our move and our ministry. (Not to mention plenty of pictures of the girls.) :o) I would like to give my friend, Robyn, a very special "thank you" for helping me out with this!
Since it is officially July the 8th (I have been up WAY too late working on this thing), I would like to say "Happy Anniversary" to my very wonderful husband, Jeff. We are celebrating 14 years of marriage today...can't believe its been that long. I am so blessed to be married to a great man who loves the Lord with all his heart. I couldn't ask for a better husband and father to my children.
At some point, I will post our testimony and how we ended up where we are, but for tonight, I must go to bed. I am just excited that I have successfully posted on our new blog, and have also successfully changed the background about 14 times. Hope you like it. :-)
Blessings!
Jeannie
Since it is officially July the 8th (I have been up WAY too late working on this thing), I would like to say "Happy Anniversary" to my very wonderful husband, Jeff. We are celebrating 14 years of marriage today...can't believe its been that long. I am so blessed to be married to a great man who loves the Lord with all his heart. I couldn't ask for a better husband and father to my children.
At some point, I will post our testimony and how we ended up where we are, but for tonight, I must go to bed. I am just excited that I have successfully posted on our new blog, and have also successfully changed the background about 14 times. Hope you like it. :-)
Blessings!
Jeannie
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