Whew! Things are really starting to be a whirlwind around here as we prepare for our move. We have a different "move date" than the last time I posted. We are now pulling out of Georgia on October 4th. I will not bore you with all the reasons why. :-)
Please pray for us as we prepare. I spent a lot of time last week trying to get everything coordinated for Clara, and what I am realizing is that there are some things that will have to wait until we get up there. I am a little frustrated about her hippotherapy. I must have been looking at the wrong thing when I thought I found a place for her to have that therapy up there. I have found two therapy ranches, but they only offer therapeutic riding. What is the difference, you might ask? In hippotherapy, there is typically no saddle, stirrups, or reins, and most importantly, a certified pysical therapist is required. Because a certified PT is always present, it is also covered by insurance. The horse is just a tool for therapy, as would be a ball or or other piece of equipment. Therapeutic riding is really horseback riding lessons for the intent of therapy and does not require a PT. Therefore it is not covered by insurance. What Clara has had this past year is a happy mix of both. She started out having pure hippo therapy until Ms. Peggy saw that she had natural talent, as did the therapeutic riding instructor that was usually there at the same time, and they decided to work together to give Clara the best of both worlds. Ms. Peggy was there for the actual therapy part, and Ms. Laura (God bless her) donated her time to be there for Clara to teach her how to ride in a saddle and use the reins. With this arrangement, Clara got the best of both worlds, AND it was covered by insurance. We have been blown away with the results of this therapy, as she has made some major milestones and absolutely loves it, but we are now praying for a way to continue it financially. The ranch is less than ten minutes from the new house.
Please pray, also, as we get rid of a lot, I mean, A LOT of junk, er,..um,...I mean, stuff. We already have too much and our next home is much smaller than the one we are in now. I am trying to wrap my brain around cleaning out, packing, planning, taking care of my family, and schooling my children, and quite honestly, I am a bit overwhelmed. In the midst of this, we are trying to fit in all of our doctor appointments before we leave, including two very big ones for Clara. Not to mention, we want to see everyone before we leave!!
We did have another big milestone here yesterday. Emilie got glasses! I wish I had pictures to show you, but my camera is still on its way back from Michigan (I am so frustrated with myself for leaving it). I will post some soon, as she is very cute and her glasses are exactly what you would expect from her....flashy! They are black with rhinestone flowers. :-) I also wish I had a video of the little girls while she tried them on. The lady at Lenscrafters gave the little ones the box of glasses that had been donated to play with. They sat in front of the mirror and giggled hysterically at all of their new "looks", and before it was over, everyone in the place was laughing. Their little giggles are very contagious.
Well, I must go...lots to do! Thanks for your prayers and I hope you all have a blessed day!!
Love,
Jeannie
Tuesday, August 31, 2010
Monday, August 23, 2010
Big News and an Update
We are back from our week in Michigan! Actually, we have been back for a week now. I am just very behind in posting this. Actually, I am behind in everything. There are so many of you who let us know you were praying for Clara, and I wanted to make sure I gave you that update. The good news is...She did GREAT! I don't know when she has ever traveled so well. We did do a few things a little differently. For example, one of the doctors at the last conference I went told me to never underestimate the amount of energy it takes to be excited. So, we tried very hard not to let our excitement build (in front of her) the week before we left. I did not even let her see me packing. We just acted like it was a normal week. We also made sure to feed her a complex carb/protein snack every three hours, so I am sure that helped with blood sugar levels. However, I am CONVINCED that it was the power of God alone, that really made the difference. If those other things helped, it was because He provided that wisdom. She did get tired, but she never threw up or crashed at all. We had to "pull back" a time or two to slow things with our schedule down a bit, but all in all, we couldn't have asked for more!
Now for other big news:
I don't think I have ever shared on this blog how we ended up with Life Action Ministries. Here is the Cliff's Notes version (as opposed to the "Jeannie's Notes" version that tends to make a short story veeeerrrry long..):
October 2004: The Life Action Red Team came to BeechHaven Baptist Church to do a two week summit (or "crusade" as they were called then.). We had never heard of Life Action Ministries, but being the good church members we were, we agreed to house two team members for the three weeks they were in town, and committed to going to every service. During that crusade, God did some MAJOR things in our lives. He dealt with us on some heart issues we did not even know we had: bitterness, unforgiveness, pride... (okay...we knew we had them, we just didn't realize to what extent, nor did we understand what a big deal that was and how those things get in the way of our relationship with Christ). God did a major work in our marriage and family, and He drew us so much closer to Him. So close, in fact, that we realized we NEVER wanted to "play church" again, but instead, wanted a living, breathing, second-by-second relationship with our God and Savior. It was also during this time that God called our hearts to the ministry.
October 2004-June 2005: We pretended our calling was just an imagined event, because doggone it, it's COLD in Michigan!
June 2005: We went to Life Action Family Camp in Michigan for the most amazing week our family has ever known. It was there that God reaffirmed our calling and we committed to coming home and (finally) filling out the ten page-long application...with essay questions (What??? I thought I was through with those when I graduated!) It was also during that week that God made it very clear that He was not through with our family in the way of children. When we came home, I had my IUD removed in July and by October, we were pregnant with Clara.
Just as a side note: This is where the title of our blog, and really, the theme of our ministry, comes from. The last message we heard that week was the one God used to make these things clear to us. It was entitled "Stepping Out of the Boat". It's a great story, but I will have to expound later. This is Cliff's Notes!
October 31, 2005: Started bleeding severely and was told by an "on call" physician that there was no baby, and I should have a D&C immediately. By God's grace, I asked if I could wait until I saw my doctor. So glad I did. We would not have Clara today. Again, another great story, but trying to keep this ship sailing....
June 2006: Clara was born and appeared healthy, for the most part.
August 2006: Pregnant with Megan. That's okay...you can laugh. Jeff did. I hyperventilated. :-)
September 2006: FINALLY got our application filled out and mailed. It seemed that everytime we picked it up to fill it out, life would fall apart. Not surprising, but still challenging.
October 2006: Interview in Michigan with Life Action Ministries and an official call.
March 2006: Started raising support.
August 2007: Our first Staff Revival Week (WOW!)
August 2008: Another Staff Revival Week (Surely, we'll be living here by this time next year!) Came home and decided to put the house on the market.
August 2009: Another Staff Revival Week. (Okay...it was GREAT spiritually, but are we EVER gonna live here???)
August 2010: Another INCREDIBLE Staff Revival Week. We lived in the cabin....again.....
...but not next year.
WE'RE MOVING!!!
We have decided to rent or sell our home. It has been listed for a little less than a week as a lease option, but either way, we are moving during the first week of October. We have a found a rental home in Michigan and will be leaving Georgia on October 10th.
More details later, but please be in prayer for all of our details. We still have two big doctor appointments with Clara in September and we have A LOT of stuff to get rid of. (Did I mention the rental has half...yes, HALF...the space we have now?) While the reality of having to leave friends and family we love so dearly has hit, we can see God's hand moving in every aspect of this move so far, and we are very excited. Please pray, also, that our home would rent or sell QUICKLY!
As always, thank you for your prayers! Please let me know how I can pray for you!
Just thought I'd let you know what's going on with the Bryants. :-D
Much Love,
Jeannie
Now for other big news:
I don't think I have ever shared on this blog how we ended up with Life Action Ministries. Here is the Cliff's Notes version (as opposed to the "Jeannie's Notes" version that tends to make a short story veeeerrrry long..):
October 2004: The Life Action Red Team came to BeechHaven Baptist Church to do a two week summit (or "crusade" as they were called then.). We had never heard of Life Action Ministries, but being the good church members we were, we agreed to house two team members for the three weeks they were in town, and committed to going to every service. During that crusade, God did some MAJOR things in our lives. He dealt with us on some heart issues we did not even know we had: bitterness, unforgiveness, pride... (okay...we knew we had them, we just didn't realize to what extent, nor did we understand what a big deal that was and how those things get in the way of our relationship with Christ). God did a major work in our marriage and family, and He drew us so much closer to Him. So close, in fact, that we realized we NEVER wanted to "play church" again, but instead, wanted a living, breathing, second-by-second relationship with our God and Savior. It was also during this time that God called our hearts to the ministry.
October 2004-June 2005: We pretended our calling was just an imagined event, because doggone it, it's COLD in Michigan!
June 2005: We went to Life Action Family Camp in Michigan for the most amazing week our family has ever known. It was there that God reaffirmed our calling and we committed to coming home and (finally) filling out the ten page-long application...with essay questions (What??? I thought I was through with those when I graduated!) It was also during that week that God made it very clear that He was not through with our family in the way of children. When we came home, I had my IUD removed in July and by October, we were pregnant with Clara.
Just as a side note: This is where the title of our blog, and really, the theme of our ministry, comes from. The last message we heard that week was the one God used to make these things clear to us. It was entitled "Stepping Out of the Boat". It's a great story, but I will have to expound later. This is Cliff's Notes!
October 31, 2005: Started bleeding severely and was told by an "on call" physician that there was no baby, and I should have a D&C immediately. By God's grace, I asked if I could wait until I saw my doctor. So glad I did. We would not have Clara today. Again, another great story, but trying to keep this ship sailing....
June 2006: Clara was born and appeared healthy, for the most part.
August 2006: Pregnant with Megan. That's okay...you can laugh. Jeff did. I hyperventilated. :-)
September 2006: FINALLY got our application filled out and mailed. It seemed that everytime we picked it up to fill it out, life would fall apart. Not surprising, but still challenging.
October 2006: Interview in Michigan with Life Action Ministries and an official call.
March 2006: Started raising support.
August 2007: Our first Staff Revival Week (WOW!)
August 2008: Another Staff Revival Week (Surely, we'll be living here by this time next year!) Came home and decided to put the house on the market.
August 2009: Another Staff Revival Week. (Okay...it was GREAT spiritually, but are we EVER gonna live here???)
August 2010: Another INCREDIBLE Staff Revival Week. We lived in the cabin....again.....
...but not next year.
WE'RE MOVING!!!
We have decided to rent or sell our home. It has been listed for a little less than a week as a lease option, but either way, we are moving during the first week of October. We have a found a rental home in Michigan and will be leaving Georgia on October 10th.
More details later, but please be in prayer for all of our details. We still have two big doctor appointments with Clara in September and we have A LOT of stuff to get rid of. (Did I mention the rental has half...yes, HALF...the space we have now?) While the reality of having to leave friends and family we love so dearly has hit, we can see God's hand moving in every aspect of this move so far, and we are very excited. Please pray, also, that our home would rent or sell QUICKLY!
As always, thank you for your prayers! Please let me know how I can pray for you!
Just thought I'd let you know what's going on with the Bryants. :-D
Much Love,
Jeannie
Wednesday, August 4, 2010
A New Day
Hi Everyone,
It's a new day! It couldn't come fast enough for me.
First, I would like to thank you, from the bottom of my heart, for the virtual hugs and encouragement yesterday. I was certainly not 'fishing' for anything like that, but all of your kind words of love and support definitely lifted my spirits and helped me to remember how many WONDERFUL friends I have!
Today has been a much better day. A dear friend, whom I have not seen all summer, met me for coffee this morning. She has been such a great friend to me for years, but certainly through all of this with Clara. She has two sons with life threatening conditions, and although different from Clara's condition, she totally 'gets' what it is like to grieve the loss of your child's health and all the hopes and dreams you had for their lives. She also 'gets' what it is like to have others not take it seriously and she has learned the hard way who her friends really are. Of course, we know that God always gives us new hopes and dreams, but it can be so hard to let go of the old ones. She has been to doctor visits with me when no one else could go, she has known what to say to me in my valleys, and today, she did such a sweet thing. When I arrived at the place we met, there was a big, hot pink bag with green polka-dots hanging on my chair, and it had a big "J" monogrammed on it. First of all, can I just mention that I have wanted a pink and green bag for as long as I can remember? So, I was already excited. Then she said, "Jeannie, this may seem a little corny, but when I saw that 'J', I thought you could certainly let it stand for "Jeannie", but you could also let it stand for "Jesus". I thought you might want to use it to put all of Clara's medical records and supplies in, and know you are leaving it all with Jesus when you do that." How precious is that? I cried again, but these were not sad tears. I was so touched by her thoughtfulness. Clara's records and supplies have already been put in our new special bag, and left with Jesus. Maybe that means I can sleep tonight, since it has all been left in good hands. :-).
The day was not all that was "new" today. We had some events around here!
New....
TEETH!
Alyssa got her braces off today, and she keeps referring to her "new teeth". (It kind of sounds like she got dentures....anyway, I digress).
New...
WEBKIN.
Emilie has been saving for a long time for a new Webkin. She loves 'em!
New...
HAIRCUT!
Clara and I went to Ms. Diana's tonight to get our summer cut. Better late than never, I guess. :-)
And some plain old fun!
Silly girl.
Do you think these two love each other a little?
It's a new day! It couldn't come fast enough for me.
First, I would like to thank you, from the bottom of my heart, for the virtual hugs and encouragement yesterday. I was certainly not 'fishing' for anything like that, but all of your kind words of love and support definitely lifted my spirits and helped me to remember how many WONDERFUL friends I have!
Today has been a much better day. A dear friend, whom I have not seen all summer, met me for coffee this morning. She has been such a great friend to me for years, but certainly through all of this with Clara. She has two sons with life threatening conditions, and although different from Clara's condition, she totally 'gets' what it is like to grieve the loss of your child's health and all the hopes and dreams you had for their lives. She also 'gets' what it is like to have others not take it seriously and she has learned the hard way who her friends really are. Of course, we know that God always gives us new hopes and dreams, but it can be so hard to let go of the old ones. She has been to doctor visits with me when no one else could go, she has known what to say to me in my valleys, and today, she did such a sweet thing. When I arrived at the place we met, there was a big, hot pink bag with green polka-dots hanging on my chair, and it had a big "J" monogrammed on it. First of all, can I just mention that I have wanted a pink and green bag for as long as I can remember? So, I was already excited. Then she said, "Jeannie, this may seem a little corny, but when I saw that 'J', I thought you could certainly let it stand for "Jeannie", but you could also let it stand for "Jesus". I thought you might want to use it to put all of Clara's medical records and supplies in, and know you are leaving it all with Jesus when you do that." How precious is that? I cried again, but these were not sad tears. I was so touched by her thoughtfulness. Clara's records and supplies have already been put in our new special bag, and left with Jesus. Maybe that means I can sleep tonight, since it has all been left in good hands. :-).
The day was not all that was "new" today. We had some events around here!
New....
TEETH!
Alyssa got her braces off today, and she keeps referring to her "new teeth". (It kind of sounds like she got dentures....anyway, I digress).
New...
WEBKIN.
Emilie has been saving for a long time for a new Webkin. She loves 'em!
New...
HAIRCUT!
Clara and I went to Ms. Diana's tonight to get our summer cut. Better late than never, I guess. :-)
And some plain old fun!
Silly girl.
Do you think these two love each other a little?Oh, and sorry for the blurry pictures. I took my camera from the icebox of a house, straight to the humid outdoors. It never did un-fog. Whoops.
Also, Clara had a great day today. She woke up feeling the best I have seen her since her crash. That makes this Mama's heart very happy. :-)
Also, Clara had a great day today. She woke up feeling the best I have seen her since her crash. That makes this Mama's heart very happy. :-)
Many blessings, friends! Have a great night!
Love,
Jeannie
Love,
Jeannie
Tuesday, August 3, 2010
Hard Day
I am really struggling today. I feel like everything is just crashing in on me. I am 100% glad I went to the conference this weekend; I learned so much that I needed to know. And while knowledge is power, knowledge can be hard. Since I returned home, I have processed things in my head over, and over, and over. I almost feel the way I did when I first got her diagnosis, all over again, and this time, I "get it" a little more. I know I will get past this feeling of being so emotionally overwhelmed. Apparently it just takes me a while, and from what I have heard, it could happen again.
It probably doesn't help that I am not feeling that great, physically. I don't know what's going on. I sang in church Sunday, which I have done dozens of times before without incident, but at the end of the second "singing" time, I really thought I was going to faint. I have never fainted...ever... and I don't really get that nervous before I sing. I did get a little hot, but I have been hot before. I was so dizzy the rest of the day and ended up with a killer of a headache. Maybe stress? Maybe too much exertion this weekend? Who knows, but either way, it has not helped me emotionally, that is for sure.
My mood today, really started yesterday. I went to the grocery store last night, and I remember standing beside the baking supplies and all of a sudden, feeling like I just wished I could do something else. My body just felt like it was going to implode; I didn't know if I wanted to cry, scream, crawl in a hole, or what. I thought about sitting in the floor and bawling, but I was pretty sure that would not go unnoticed by others around me. Then I just wanted to eat, but that would just make me miserable in the end. The bottom line is, none of those options would help Clara, which is what I really want.
Just today, I have heard "wind" of well-meaning friends telling others things about Clara that are just not true. That has not helped my general "funk" today. The bottom line is, this is a dangerous disease. It is, in Clara's case, congenital, and it is very genetic. There are NO cures at this time, regardless of what others want to tell me or sell me. She is not "just a little tired, but will get better with some vitamins". Don't get me wrong. I don't want 'big drama and fanfare', or everyone walking around pitying her or making her "special" because she has a disease. But if someone doesn't know what they are talking about, they shouldn't say anything at all. That goes for anytime...not just about someone's child. This was said to people who wanted to pray for Clara, and by someone (or some ones) who I have considered a friend. It IS a big deal and she needs all the prayers she can get. I know I shouldn't care what others think....that just threw me for a loop. I don't want to be petty either. It is just so frustrating. I guess I will learn who my friends are.
Clara woke up today feeling "yuck". She told me her body hurt all over and she wanted to lay around. As I sat there holding her, I just thought, "Who am I to spend this much energy being this upset, when she deals with intense pain, almost daily, like such a champ?" She has been through so many painful procedures and rarely complains. Everything in me wants to just build a fort around her so nothing else can hurt her or harm her, and no bad germ can ever get near her. One sickness or one fever can change the whole course of this disease and that scares me to death. As every parent in this situation, I would give my very life to make this sweet girl well. But my life wouldn't help much. I am so thankful for Jesus, who DID give His life, to make us all well...spiritually well, and I praise Him that one day, whether on this earth or not, she is going to be well in every way. We are still praying for complete healing. We believe it can happen.
So sorry this is so depressing. it's just where I am today. This has been a stressful year, anyway, with Clara's diagnosis, trying to sell a house, dealing with Emilie's junk, and the list goes on. I think the past few days, it has all come together and wiped me out. Of course, I need to be preparing for our trip. I have GOT to get over this.
There have been some wonderful things happen today. I have an appointment with the Mito specialist I told you about. She is scheduled for September 15th, which is also a Wednesday so Jeff can go too! That is rare that he gets to go along with us, but this one is very important, so I am glad he gets to go. Also, we are really, really suspecting some blood sugar issues with Clara (that can very much go along with Mito) and Mito-Mom called today and wants to loan us her glucometer and a ketone meter. I am so thrilled and touched by this. God has put a truly amazing person in my life to help me through this. Mito-Mom, you are the BEST!!
As I type, I got an e-mail from a sweet, sweet friend in Michigan who has been researching mitochondrial disease specialists in that area for our trip. I did not ask her to do that...she just did, because she is so thoughtful and because she loves us. God really is so good and the most excellent provider.
So, what does a Mom do when she is almost too overwhelmed to function? Well, I don't know about others, but this one does something crafty. I wanted the girls to have hooded towels to take to Michigan, and I found some on clearance a Kohl's for $35 each. YIKES! $35 x 4??? Sorry. Can't do that. So I found some here and decided to make them and use the left over towel for a beach bag to carry their towels and sunscreen in. You may be surprised that the big girls want one, too. I have one thing to remind you of: The big "M", little "m" activity. 'Nuff said. :-) Here they are:
Here they are. Both babies wanted pink, so I just made the trim a little different. Alyssa wanted green and no trim. Surprise. :-)
I am in the process of making them all bags to match their towels, but Emilie and Clara's bags are the only ones that are (almost) done. They still need straps.
This is just a bonus. I thought it was cute. :-)
Well, tomorrow is another day, and His mercies are new every morning. I'm looking forward to that. :-)
Love you all! Goodnight!
Jeannie
It probably doesn't help that I am not feeling that great, physically. I don't know what's going on. I sang in church Sunday, which I have done dozens of times before without incident, but at the end of the second "singing" time, I really thought I was going to faint. I have never fainted...ever... and I don't really get that nervous before I sing. I did get a little hot, but I have been hot before. I was so dizzy the rest of the day and ended up with a killer of a headache. Maybe stress? Maybe too much exertion this weekend? Who knows, but either way, it has not helped me emotionally, that is for sure.
My mood today, really started yesterday. I went to the grocery store last night, and I remember standing beside the baking supplies and all of a sudden, feeling like I just wished I could do something else. My body just felt like it was going to implode; I didn't know if I wanted to cry, scream, crawl in a hole, or what. I thought about sitting in the floor and bawling, but I was pretty sure that would not go unnoticed by others around me. Then I just wanted to eat, but that would just make me miserable in the end. The bottom line is, none of those options would help Clara, which is what I really want.
Just today, I have heard "wind" of well-meaning friends telling others things about Clara that are just not true. That has not helped my general "funk" today. The bottom line is, this is a dangerous disease. It is, in Clara's case, congenital, and it is very genetic. There are NO cures at this time, regardless of what others want to tell me or sell me. She is not "just a little tired, but will get better with some vitamins". Don't get me wrong. I don't want 'big drama and fanfare', or everyone walking around pitying her or making her "special" because she has a disease. But if someone doesn't know what they are talking about, they shouldn't say anything at all. That goes for anytime...not just about someone's child. This was said to people who wanted to pray for Clara, and by someone (or some ones) who I have considered a friend. It IS a big deal and she needs all the prayers she can get. I know I shouldn't care what others think....that just threw me for a loop. I don't want to be petty either. It is just so frustrating. I guess I will learn who my friends are.
Clara woke up today feeling "yuck". She told me her body hurt all over and she wanted to lay around. As I sat there holding her, I just thought, "Who am I to spend this much energy being this upset, when she deals with intense pain, almost daily, like such a champ?" She has been through so many painful procedures and rarely complains. Everything in me wants to just build a fort around her so nothing else can hurt her or harm her, and no bad germ can ever get near her. One sickness or one fever can change the whole course of this disease and that scares me to death. As every parent in this situation, I would give my very life to make this sweet girl well. But my life wouldn't help much. I am so thankful for Jesus, who DID give His life, to make us all well...spiritually well, and I praise Him that one day, whether on this earth or not, she is going to be well in every way. We are still praying for complete healing. We believe it can happen.
So sorry this is so depressing. it's just where I am today. This has been a stressful year, anyway, with Clara's diagnosis, trying to sell a house, dealing with Emilie's junk, and the list goes on. I think the past few days, it has all come together and wiped me out. Of course, I need to be preparing for our trip. I have GOT to get over this.
There have been some wonderful things happen today. I have an appointment with the Mito specialist I told you about. She is scheduled for September 15th, which is also a Wednesday so Jeff can go too! That is rare that he gets to go along with us, but this one is very important, so I am glad he gets to go. Also, we are really, really suspecting some blood sugar issues with Clara (that can very much go along with Mito) and Mito-Mom called today and wants to loan us her glucometer and a ketone meter. I am so thrilled and touched by this. God has put a truly amazing person in my life to help me through this. Mito-Mom, you are the BEST!!
As I type, I got an e-mail from a sweet, sweet friend in Michigan who has been researching mitochondrial disease specialists in that area for our trip. I did not ask her to do that...she just did, because she is so thoughtful and because she loves us. God really is so good and the most excellent provider.
So, what does a Mom do when she is almost too overwhelmed to function? Well, I don't know about others, but this one does something crafty. I wanted the girls to have hooded towels to take to Michigan, and I found some on clearance a Kohl's for $35 each. YIKES! $35 x 4??? Sorry. Can't do that. So I found some here and decided to make them and use the left over towel for a beach bag to carry their towels and sunscreen in. You may be surprised that the big girls want one, too. I have one thing to remind you of: The big "M", little "m" activity. 'Nuff said. :-) Here they are:
Here they are. Both babies wanted pink, so I just made the trim a little different. Alyssa wanted green and no trim. Surprise. :-)
I am in the process of making them all bags to match their towels, but Emilie and Clara's bags are the only ones that are (almost) done. They still need straps.
This is just a bonus. I thought it was cute. :-)
Well, tomorrow is another day, and His mercies are new every morning. I'm looking forward to that. :-)
Love you all! Goodnight!
Jeannie
Sunday, August 1, 2010
Knowledge is Power
Knowledge is power.
I really do believe that.
However, in the months since Clara's diagnosis, I have been living somewhere else.
Denial...
...and I don't mean the river. (Sorry. Jeff humor.)
To be honest, I didn't realize that's where I have been living until this weekend.
Sure, I am aware of the seriousness of Clara's disease. I have tried to be very proactive in taking care of her. Not perfect, by any stretch, but I have done my best. But this weekend, it was all right in front of me. The very dark side of mitochondrial disease.
When I look at Clara, I do not see a disease. I do not see sickness. I see a sass-a-frass of a cutie that makes my heart skip a beat every time she walks into the room. I see a smart little charmer who can work her way into the coldest of hearts...I've seen it happen. I see the little miracle that we never thought I would even carry, let alone birth and fall absolutely in love with. I see a little girl who loves to play dress-up, do ballet with Bella Dancerella, read books together, color, and ask me what every single thing we see 'starts' with. I see sweet, funny, charming, strong in personality and will, and so much more. Sure, she gets tired easily, she cannot tolerate heat, and we have to be so very careful of the way we schedule her activities, because in many ways, she is fragile. But those are just not the things I want to define my little girl.
However, two weeks ago, it all came crashing down (literally). Clara had a big crash. Not the kind of crash you have when you hit a wall or fall down the stairs, but a metabolic crash. I have heard of them and know people whose children have experienced them, but it had never been Clara. She had experienced some minor crashes that were fixed with Gatorade and rest...but this one took the cake. I don't know when I have ever been so scared for one of my children.
As always, though, God worked that crash for our good. We realized some important things as a result:
1. We still do not understand what we are dealing with.
Please do not misunderstand me. Up to this point, we have worked with some wonderful primary doctors, specialists, and sub-specialists. As a matter of fact, I think we have worked with some of the best there are. Our needs have just changed. In the midst of that crash we did not have a doctor that understood mito to tell us what to do, and that was a lonely, scary place to be.
That leads me to this past weekend. I knew I needed more knowledge, and once again, Mito-Mom lead the way. She is part of an FOD support group that sponsored a conference Friday and Saturday that was hosted by Emory University School of Medicine, Department of Human Genetics. While I will not bore you with all the details (unless you really want to know, and you ask for them), but I really want to share some of the high points.
What is FOD, you might ask?
Well, it stands for Fatty-acid Oxidation Disorder, and it is estimated that 30-40% of mito kids are affected. The way one of the specialists explained it is that the group of enzymes that contains the respiratory chain where the mitochondrial disease is, and the group of fatty acids where the FOD occurs, touch. Think of it as two houses of cards stacked right beside each other. If you take a card out of one of the houses and it crashes, it makes the one beside it crash with it. So, while it is not necessarily a second disease for mito kids, they can be affected with many of the same symptoms. Mitochondrial disease and FOD are both metabolic disorders, and while mitochondrial diseases are still considered rare (although there are as many people affected with them as there are people affected with cystic fibrosis), FODs are even more rare, and while there are many different types, there is still so little they know about them. This conference was a national conference and there were some VERY well-known doctors there; many of them were mitochondrial disease experts, and almost all of them were metabolic disorder specialists. If you have followed our story at all, you know we have not encountered many of those. Actually, there aren't that many to encounter. That made it extra cool to be in a place where there was a concentration of them. They all presented some great information, and even better, they were so very approachable and more than willing to answer questions between sessions. They usually sat with us at meals, too. In large part, they do what they do for the patients, as they are not paid very well because they do not have a "popular" specialty. But they have a passion for those affected and their families. Love that.
Here are the high points of my weekend:
*Being with Mito-Mom for two whole days...even in the car...and getting to ask her anything I wanted! Her 18 year-old delight-of-a-daughter came with us, too, and we had a BALL!!
*Meeting some really great, compassionate doctors who understand Clara's disease, at least as much as it can be understood at this point.
*Meeting some other Moms/Families that are dealing with the same issues we are.
*Meeting the representatives for a few of the foundations set up to help these children, and getting some very practical information about things like handling crashes, preventing crashes, ordering wheelchairs, filling out paperwork, and what to say to the ER doctors when you walk in. You think we don't know much about mito? Think about those poor, unsuspecting ER doctors that have to know so much about everything...but this disease is usually not one of them.
*Last, but certainly not least, WE FOUND A MITO DOCTOR FOR CLARA!!!!! This mito specialist used to work with Dr. Schoffner, the neurogeneticist that did Clara's biopsy. She has now started her own practice and is seeing patients. (Dr. Schoffner does not see patients. He is strictly a diagnostician and researcher.) I actually sat beside her in one of our break-out sessions. Honestly, I was too choked up while everyone was talking to say anything, so I just listened. But when it was over, I introduced myself to her and told her a little about Clara and our situation. I told her about "the crash" and she said, "Without a doubt, she should have been hospitalized". (I actually heard that from 3 of the mito specialists that were there when I told them about Clara. If you remember, Mito-Mom told me the same thing, but how do you run a kid to the ER without a doctor to call for support who understands why she is there? Hind-sight is 20/20). She told me that she would be honored to be Clara's doctor and to call her office and make an appointment. She is scheduling for September right now, but in a way, that is good. It will give us time to save up the money, as she does not take insurance. She will give us the forms to file for reimbursement. That is another story for another day, but I will leave it at: I understand why she does that, and it's okay. :-)
There were some very hard parts, aside from trying to understand all the charts, "pathways", and really big words. (Keep in mind...I was a MUSIC major. They don't teach you this stuff in Music School.) :-)
*While it was so great to learn so much, it was hard to learn so much. For example, I learned that a crash can cause many things including, but not limited to, sudden death, kidney failure, liver damage, brain damage...the list goes on.
*I saw a very dark side of these diseases. I saw the feeding tubes and wheelchairs, and met some of these precious children who are suffering much worse than Clara. I met the Moms who are changing the diapers of their 9 year-old children, and a number of Moms who have already lost their children. I saw what could be to come...although we are praying against it in a HUGE way! I met one very beautiful girl who had lead a very healthy life for 19 years, and then one day, while being a counselor at a camp for disabled children, she crashed. She had to be revived and woke up in the hospital with Mito/FOD. She now has a feeding tube, IV port, and spends a great deal of time in a wheelchair. I met another sweet baby who is suffering with a whole list of symptoms who cannot get a diagnosis (yet),....and the list goes on. See why I was too choked up to talk?
*As is usually the case, I am even more aware, now, of how much I still do not know or understand. Right now, my temptation is to beat myself up for the mistakes I have already made, but I know I can't go there. I have to pray for grace and mercy from a kind and compassionate Heavenly Father who loves my sweet girl more than I do (as hard as that is to fathom).
Overall, a good weekend. It was a lot to take in, like drinking from a fire hydrant, and I left with a headache, but I could not have asked for a better experience. Emory took very good care of us. Did you know the Emory Hotel and Conference Center has a bowling alley in it? A pretty one, at that. Who knew?? I only wish I had taken some molecular biology. Maybe I could have understood a little more of that language those doctors were speaking. :-)
Once again, thank you for your prayers. Please continue to pray for us this week as we prepare to go to Michigan next Saturday for Staff Revival Week. Pray that Clara will handle the trip well (that is usually a hard thing for her). She is not quite 100% from her crash, so we are praying she will bounce back all the way before we leave. Also, please pray that we get all of our newsletters done before we leave so we can mail them from MI.
Much love,
Jeannie
I really do believe that.
However, in the months since Clara's diagnosis, I have been living somewhere else.
Denial...
...and I don't mean the river. (Sorry. Jeff humor.)
To be honest, I didn't realize that's where I have been living until this weekend.
Sure, I am aware of the seriousness of Clara's disease. I have tried to be very proactive in taking care of her. Not perfect, by any stretch, but I have done my best. But this weekend, it was all right in front of me. The very dark side of mitochondrial disease.
When I look at Clara, I do not see a disease. I do not see sickness. I see a sass-a-frass of a cutie that makes my heart skip a beat every time she walks into the room. I see a smart little charmer who can work her way into the coldest of hearts...I've seen it happen. I see the little miracle that we never thought I would even carry, let alone birth and fall absolutely in love with. I see a little girl who loves to play dress-up, do ballet with Bella Dancerella, read books together, color, and ask me what every single thing we see 'starts' with. I see sweet, funny, charming, strong in personality and will, and so much more. Sure, she gets tired easily, she cannot tolerate heat, and we have to be so very careful of the way we schedule her activities, because in many ways, she is fragile. But those are just not the things I want to define my little girl.
However, two weeks ago, it all came crashing down (literally). Clara had a big crash. Not the kind of crash you have when you hit a wall or fall down the stairs, but a metabolic crash. I have heard of them and know people whose children have experienced them, but it had never been Clara. She had experienced some minor crashes that were fixed with Gatorade and rest...but this one took the cake. I don't know when I have ever been so scared for one of my children.
As always, though, God worked that crash for our good. We realized some important things as a result:
1. We still do not understand what we are dealing with.
2. Clara does not have a mito doctor-and she desperately needs one.
What is FOD, you might ask?
Well, it stands for Fatty-acid Oxidation Disorder, and it is estimated that 30-40% of mito kids are affected. The way one of the specialists explained it is that the group of enzymes that contains the respiratory chain where the mitochondrial disease is, and the group of fatty acids where the FOD occurs, touch. Think of it as two houses of cards stacked right beside each other. If you take a card out of one of the houses and it crashes, it makes the one beside it crash with it. So, while it is not necessarily a second disease for mito kids, they can be affected with many of the same symptoms. Mitochondrial disease and FOD are both metabolic disorders, and while mitochondrial diseases are still considered rare (although there are as many people affected with them as there are people affected with cystic fibrosis), FODs are even more rare, and while there are many different types, there is still so little they know about them. This conference was a national conference and there were some VERY well-known doctors there; many of them were mitochondrial disease experts, and almost all of them were metabolic disorder specialists. If you have followed our story at all, you know we have not encountered many of those. Actually, there aren't that many to encounter. That made it extra cool to be in a place where there was a concentration of them. They all presented some great information, and even better, they were so very approachable and more than willing to answer questions between sessions. They usually sat with us at meals, too. In large part, they do what they do for the patients, as they are not paid very well because they do not have a "popular" specialty. But they have a passion for those affected and their families. Love that.
Here are the high points of my weekend:
*Being with Mito-Mom for two whole days...even in the car...and getting to ask her anything I wanted! Her 18 year-old delight-of-a-daughter came with us, too, and we had a BALL!!
*Meeting some really great, compassionate doctors who understand Clara's disease, at least as much as it can be understood at this point.
*Meeting some other Moms/Families that are dealing with the same issues we are.
*Meeting the representatives for a few of the foundations set up to help these children, and getting some very practical information about things like handling crashes, preventing crashes, ordering wheelchairs, filling out paperwork, and what to say to the ER doctors when you walk in. You think we don't know much about mito? Think about those poor, unsuspecting ER doctors that have to know so much about everything...but this disease is usually not one of them.
*Last, but certainly not least, WE FOUND A MITO DOCTOR FOR CLARA!!!!! This mito specialist used to work with Dr. Schoffner, the neurogeneticist that did Clara's biopsy. She has now started her own practice and is seeing patients. (Dr. Schoffner does not see patients. He is strictly a diagnostician and researcher.) I actually sat beside her in one of our break-out sessions. Honestly, I was too choked up while everyone was talking to say anything, so I just listened. But when it was over, I introduced myself to her and told her a little about Clara and our situation. I told her about "the crash" and she said, "Without a doubt, she should have been hospitalized". (I actually heard that from 3 of the mito specialists that were there when I told them about Clara. If you remember, Mito-Mom told me the same thing, but how do you run a kid to the ER without a doctor to call for support who understands why she is there? Hind-sight is 20/20). She told me that she would be honored to be Clara's doctor and to call her office and make an appointment. She is scheduling for September right now, but in a way, that is good. It will give us time to save up the money, as she does not take insurance. She will give us the forms to file for reimbursement. That is another story for another day, but I will leave it at: I understand why she does that, and it's okay. :-)
There were some very hard parts, aside from trying to understand all the charts, "pathways", and really big words. (Keep in mind...I was a MUSIC major. They don't teach you this stuff in Music School.) :-)
*While it was so great to learn so much, it was hard to learn so much. For example, I learned that a crash can cause many things including, but not limited to, sudden death, kidney failure, liver damage, brain damage...the list goes on.
*I saw a very dark side of these diseases. I saw the feeding tubes and wheelchairs, and met some of these precious children who are suffering much worse than Clara. I met the Moms who are changing the diapers of their 9 year-old children, and a number of Moms who have already lost their children. I saw what could be to come...although we are praying against it in a HUGE way! I met one very beautiful girl who had lead a very healthy life for 19 years, and then one day, while being a counselor at a camp for disabled children, she crashed. She had to be revived and woke up in the hospital with Mito/FOD. She now has a feeding tube, IV port, and spends a great deal of time in a wheelchair. I met another sweet baby who is suffering with a whole list of symptoms who cannot get a diagnosis (yet),....and the list goes on. See why I was too choked up to talk?
*As is usually the case, I am even more aware, now, of how much I still do not know or understand. Right now, my temptation is to beat myself up for the mistakes I have already made, but I know I can't go there. I have to pray for grace and mercy from a kind and compassionate Heavenly Father who loves my sweet girl more than I do (as hard as that is to fathom).
Overall, a good weekend. It was a lot to take in, like drinking from a fire hydrant, and I left with a headache, but I could not have asked for a better experience. Emory took very good care of us. Did you know the Emory Hotel and Conference Center has a bowling alley in it? A pretty one, at that. Who knew?? I only wish I had taken some molecular biology. Maybe I could have understood a little more of that language those doctors were speaking. :-)
Once again, thank you for your prayers. Please continue to pray for us this week as we prepare to go to Michigan next Saturday for Staff Revival Week. Pray that Clara will handle the trip well (that is usually a hard thing for her). She is not quite 100% from her crash, so we are praying she will bounce back all the way before we leave. Also, please pray that we get all of our newsletters done before we leave so we can mail them from MI.
Much love,
Jeannie
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