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
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