Here I am, old enough to have a teenager (wow), and I am definitely starting to feel my age! I have always heard that when you get older, you get a little bolder and you start to say and do things you would never have dreamed before....I believe it!
Alyssa received some money for her birthday. Actually, as sad as we were to be celebrating such a big milestone so far away from home, I think her day turned out pretty well. Our friends, the Rohls, came over, and we had three other of our friends here while their parents loaded a moving truck, so it felt like a party. I have been so touched at the way the Rohls have taken us in as their own. She opened some gifts and a big box that we got in the mail from Grandma Jackie (that actually had a little bit of something for everyone). The Rohls brought a bouquet of balloons, Emilie and Grace (one of our friends) made decorations-o-plenty, and we had lots of food....it was fun. :-) That afternoon, we took Alyssa to get her first make-up and taught her how to put it on for a natural look that would be appropriate for a thirteen year-old girl. That night, her Daddy took her on a date....dinner and a movie!
After all the partying, she had some money and gift cards that were burning a hole in her pocket. I had a noon appointment at the eye doctor yesterday ( in the mall), so we decided to go and make a day of it. I told the girls that once my appointment was over, we could go visit the places they wanted to go.
Okay...so here's where the "older/bolder" part comes in.
We arrived at the eye doctor five minutes early...nothing short of a miracle for us. There are some appointments you totally expect to wait for...the pediatrician in the middle of flu season, the OB when he has an OB emergency (those babies aren't always very predictable), but the eye doctor.....um, how many eye emergencies are there? I filled out my paperwork and the nurse took me back for all the "preliminary" stuff.
And then we sat.
And sat.
And sat.
And sat.
I could hear her (the doctor) talking and laughing with someone. And then this fella walked in and said he was there for some experiment with the doctor, so they took him straight back for about 5 minutes and then back up to the front to make a future appointment.
And then I sat some more.
Then her 12:30 appointment arrived. When I heard the lady say that, I laughed out loud. (Whooops...it totally slipped).
At 12:38 I very nicely told the lady at the desk that I was going to have to leave.
She looked shocked and said, "Are you sure?"
I said, "Yes. I did not allot time for this kind of a wait today and I have a lot of other things on my schedule today (not to mention I was sitting in a tiny waiting area with four ticking time bombs.)
We got up to leave, but the chord to Alyssa's ear buds was tangled around the wheel on the stroller, so after the few minutes it took to finish that, we left at 12:40. Was that unreasonable? A year ago I wouldn't have done that. Maybe I have grown hard from dealing with so many doctors, or maybe I am just getting old, but I have come to expect better service.
So we spent the time at the mall I had promised the girls. I also realized how DESPERATELY we need for Clara's adaptive stroller to come in. It is taking FOREVER! She had a bit of a rough day yesterday. There were a few times I looked down at her in her (too little) stroller and she almost looked catatonic. I don't like it when she looks like that.
I was starting to let myself feel a little encouraged about the possibility that her newest diagnosis was her only diagnosis. The day after I talked to Dr. Kendall, Dr. Berenson, Clara's neurologist in Atlanta...aka, her boyfriend, called out of the blue and said that he had talked with Dr. Kendall and that he was very excited about her newest diagnosis and thought there was a great possibility that after treating Clara for the rickets, we would be done. (That is a gross paraphrase.) Additionally, remember the supplement I told you that Dr. Kendall started Clara on for her muscle pain? Well, I got the nerve to stop the ibuprofen about a month ago, and she has had no muscle pain.
Until yesterday..... So it is those kinds of days that I really think we are dealing with both diseases, and I don't see how in the world we can take away the mito diagnosis. She was exhausted all day, had a hard time focusing, and every muscle in her body hurt. She had ketones in her blood. It was a low level, but they were still there. Does rickets really cover all of of her symptoms? I am very apprehensive. Hopeful, but apprehensive.
The rest of the day was nuts, and didn't get any less weird. I had promised dinner to a family last night, and when I got it there, they were not home and I haven't heard anything else from them. Weird. I had to leave the food with a neighbor. I hope they got it.
Last night was wonderful, though. Bible study started. We are studying from the book Lies Women Believe by Nancy Leigh DeMoss and I can tell you, it's gonna be great! God is already starting a huge work and I know He is going to do some pretty incredible things through this study. If you have not read the book (and you are a woman), I highly recommend it.
Otherwise, we have been enjoying the beautiful Spring weather. It is raining cats and dogs today, but it has been so nice the last few days I can't get too upset. :-)
So...I am off to make another eye appointment somewhere else. I pray your day is blessed!
Much love,
Jeannie
Tuesday, March 22, 2011
Saturday, March 19, 2011
I Have a Teenager!!
Yes, it's true.
I cannot believe it has been 13 years since the birth of my precious first-born. I still remember it like it was yesterday.
We could not have been more excited about the birth of our sweet baby girl. She was not the first grand baby on either side of our family, but she was our first, and we were elated !
It took her a very, veerrryyy long time to decide she wanted to enter this world, and still today, she does nothing on impulse. Every decision is made with lots of thought and lots of caution. (She definitely gets that from her Daddy.)
I have loved raising my red-haired beauty, and I look forward to many years ahead of watching her grow. Jeff and I are both so excited to see what God will do with her life, and love the young woman she is blossoming into.
She is kind and compassionate (as long as your name is not Emilie and you don't share a room with her.)
She is talented and diligent in her work.
She absolutely adores her baby sisters.
And there is always an extra special place in her heart for animals. She wants to be a veterinarian, and although I am fully aware that goal could change, I know she is fully capable of accomplishing that goal.
More importantly, she loves the Lord and has a heart to do what is right. I wish I had that heart at thirteen years old.
I know that as you attempt to spread your wings in the next few years, we may butt heads. We already have. But I hope you always know that right or wrong, our desire is always to look out for your best interest.
Alyssa, you are such a beautiful girl, inside and out, and we love you so very, very much!
Happy Birthday, Sweet Girl!! I hope your day is everything you hoped it would be!!
I cannot believe it has been 13 years since the birth of my precious first-born. I still remember it like it was yesterday.
It took her a very, veerrryyy long time to decide she wanted to enter this world, and still today, she does nothing on impulse. Every decision is made with lots of thought and lots of caution. (She definitely gets that from her Daddy.)
I have loved raising my red-haired beauty, and I look forward to many years ahead of watching her grow. Jeff and I are both so excited to see what God will do with her life, and love the young woman she is blossoming into.
She is kind and compassionate (as long as your name is not Emilie and you don't share a room with her.)
She is talented and diligent in her work.
She absolutely adores her baby sisters.
And there is always an extra special place in her heart for animals. She wants to be a veterinarian, and although I am fully aware that goal could change, I know she is fully capable of accomplishing that goal.
More importantly, she loves the Lord and has a heart to do what is right. I wish I had that heart at thirteen years old.
I know that as you attempt to spread your wings in the next few years, we may butt heads. We already have. But I hope you always know that right or wrong, our desire is always to look out for your best interest.
Alyssa, you are such a beautiful girl, inside and out, and we love you so very, very much!
Happy Birthday, Sweet Girl!! I hope your day is everything you hoped it would be!!
Thursday, March 17, 2011
The Village People
I have definitely had moments here in Michigan where this, and other, labels apply. It is amazing what happens to a person when their comfort zone is removed. In many ways it has been great....it has exposed areas of my sinful nature that would not have been exposed otherwise. But in some ways, it has just led to some very embarrassing moments.
It seems that everywhere I turn lately, I am hearing about the importance of 1) a healthy body image and 2) taking care of our bodies. I don't mean in a vain sort of way, but in a godly way, to make us more able to serve Him. When Alyssa, Emilie, and I went to Secret Keeper Girls there was a lot of teaching about the labels we put on ourselves (or allow Satan to put on us) that make us feel like we are, well, what those labels say....fat, ugly, loud, insignificant.....insert your own labels. They stressed to the girls (and the Moms) how important it was to remove those labels with scripture, and gave us a number of scriptures that countered those labels. The bottom line was that we all should realize that God is enthralled with our beauty, He created us, and we need to understand how very much He loves us. To add to that, the little girls have been watching the Veggie Tales movie, "Sweet Pea Beauty", which has that same message. (BTW, if you have young girls and you have not seen that one, I highly recommend it.)
Last week in Bible study, as part of her teaching, Beth Moore did this big, long thing about how when we accept Christ as Savior, He puts a stamp on our head, marks us as His own, and we should live our lives like we are daughters of the King. (Okay, greatly paraphrased, but trying not to preach a sermon here....I have a story to tell!) But basically, we should treat our bodies as if we are temples of the Most High God, because we are.
If you know me at all, you know I have always been very self-conscious about my weight...even when I shouldn't have been. I wish I had known 20 years ago that true beauty had nothing to do with how much I weighed or what size clothes I wore. There have been times in my life when I was very thin and fit (and still thought I wasn't), and then there are times, like now, when I know my weight has gotten out of control, and while I know that "thin" does not always equal "beautiful", for me, "thin" would certainly equal "a better quality of life". I just think about how much better I could serve Him and my family if I felt better and all this weight wasn't putting so much extra pressure on my body. So now that I have made completely public something is very private, and embarrassing, to me, what I really want to share is how I have gotten my family into something that I am not quite sure how we are going to complete it.
In the midst of this work that God has been doing in me, I was at the chiropractor two weeks ago when he mentioned to me something that was coming up in the community on Labor Day. (My thoughts will be in parenthesis)
He handed me a brochure and said, "A lot of my patients are signing up for this triathlon on Labor Day."
(That's nice. I wonder what I am going to cook for supper?)
"Last year I got a bunch of us to all sign up so we could do it together."
(Why is he telling me this? Does he always wear those pants? Oooh, look! Sunshine outside the window.)
It's really not that hard. It's a 200 meter swim, an 8 mile bike ride, and a 1 1/2 mile run."
(Has this man taken one look at me, and doesn't he know I couldn't run a mile and a half if Freddy Kruger was chasing me? I wonder if my cute capris from last summer still fit me? I think it's almost time to change the oil in the van.)
"So this year, I thought we could all do it together and I 'll give everyone a T-Shirt and we'll come here after it's over and have a big cookout."
I said, "Ooooh....that sounds fun. Sign us up!!"
It's funny how a social gathering changes everything. :-)
Instantly, I thought it would be such a fun thing for our family to do together. We have all been wanting to get into better physical health, and maybe we need a goal!
So, that night when Jeff got home, I said, "Honey, what would you think about doing a triathlon?" (Notice how I kind of got this all out of order. Unfortunately, that's pretty common for me.)
He said, "Ummmm yeah, Dr. Bolton mentioned something about that to me."
"Doesn't that sound fun??!!??"
Well, he kind of looked at me strange and said, "Ummm....I don't know if 'fun' is the right word, but we can do it if you want to."
After thinking about it a little, I said, "Ummm, Jeff, I guess I am going to need some decent running shoes if we are going to train for a triathlon...and so will you. Come to think of it, Alyssa and Emilie don't have any either. Wait a minute...how are we going to train for a triathlon? We don't even own a bicycle? And, don't you have to know how to swim to do a triathlon? I don't swim very well."
By this time I was laughing hysterically.
Jeff got his sly grin on his face and said, "Umm, Baby, that's why you don't READY, FIRE, AIM." (Oh, but I soooo do that so often) He added, "I think all you heard when you were talking to Dr. Bolton was 'blah blah blah blah blah blah blah blah blah cookout and a free t-shirt."
Well, now I was really laughing hysterically. He was RIGHT!!!
So days went by and I kept thinking how we needed to go work out if we were going to get ready for this thing. Finally, a few days ago, we took the plunge. We were all just hanging around the house and I said, "Alright kids, get dressed. We are going to the 'Y'" . (Speaking of READY, FIRE, AIM......)
So once we were there and had the babies settled in "daycare" (as they like to call it), we headed up to the track. It was then that I actually looked at my children... I mean, really looked. Alyssa was dressed like she knew where she was going, but Emilie? Oh, Emilie. Fashion is what matters to her.She might have a rat's nest the size of a baseball in the back of her hair, and she may have pulled her clothes out of the bottom of the hamper, by by George, she'll look cute! She had on a cute shirt, black leggings, a hat, her yellow purse with sequin accents and zebra-striped flip flops with a big rhinestone on the toe. I wish I had a picture. I started walking around the track when out of the blue I hear, "FLAP FLAP FLAP FLAP FLAP FLAP FLAP FLAP FLAP FLAP" VERY loudly. I turn around to see Emilie, running like crazy to catch up with me, her arm bent up to hold her purse, hitting everyone she passed with her purse and grinning ear-to-ear.
It didn't help that I had to keep stopping to get Alyssa to help me figure out her MP3 player that she, so generously, let me borrow. And then my feet were KILLING me, so I kept having to stop to ride the bikes to give my feet a rest. During one of my stops, Emilie came over to ask me a question, and not paying attention to her surroundings (as usual) the pedal of my bike hit her knee. About that time Alyssa came around, just as I was asking Emilie, "Are you okay?" Alyssa turned a bright shade of three colors of red, black , and purple, and I said, "What's wrong with you?" She said,....well, I couldn't hear what she said...I could only see her mouth moving, so I said, "Alyssa, what is wrong with you? Emilie, are you okay." Alyssa responded, "MOM' YOU DON'T HAVE TO TALK SO LOUD!" oh. Whoops. Ear buds still in my ears.
So, at this point, Emilie is screaming wildly...and I do mean wildly. (She doesn't have the best control over her emotions.) Not only is Alyssa embarrassed to be with us, but now, her sister is making a scene, her mother is talking really loudly, and not only that, she is saying her name, with a southern accent, over and over, VERY LOUDLY! Needless to say, we drew a little attention to ourselves.
So after a grueling 7 minute workout, we left feeling a little defeated. Village People? Hillbillies? Rednecks? Just add any old label. I am sure the people around us thought all of those people had moved to town. :-) We just needed our Indian and construction worker costumes.
That's okay. We came with costumes of our own. :-)
Just to be clear, we are actually going to do the "sprint" type of triathlon (I think that's what it's called.) We did consider backing out because, to be honest, I am so out of shape, I don't see how I will ever get it together in time. Honestly, I am scared I am going to have a heart attack training for it. However, my brother assures me that since I was in such good shape at one time (between the Army and years of marching band) that my body will remember and it will be possible to do it. To throw in an extra incentive, he is going to try to be here for it. If you know me, you know how much I love my siblings, so to get to see one of them would be the greatest motivator ever! AND...apparently, they are going to have life guards and divers at the swim, so I won't drown. Comforting, don't you think?
So why do I tell you all this? To help me be accountable. Feel free to heckle me everyday about whether or not I am eating healthy and exercising. If you don't, I have my very own first-born right here in my house to crack the whip on us all.
Much love!
Jeannie
It seems that everywhere I turn lately, I am hearing about the importance of 1) a healthy body image and 2) taking care of our bodies. I don't mean in a vain sort of way, but in a godly way, to make us more able to serve Him. When Alyssa, Emilie, and I went to Secret Keeper Girls there was a lot of teaching about the labels we put on ourselves (or allow Satan to put on us) that make us feel like we are, well, what those labels say....fat, ugly, loud, insignificant.....insert your own labels. They stressed to the girls (and the Moms) how important it was to remove those labels with scripture, and gave us a number of scriptures that countered those labels. The bottom line was that we all should realize that God is enthralled with our beauty, He created us, and we need to understand how very much He loves us. To add to that, the little girls have been watching the Veggie Tales movie, "Sweet Pea Beauty", which has that same message. (BTW, if you have young girls and you have not seen that one, I highly recommend it.)
Last week in Bible study, as part of her teaching, Beth Moore did this big, long thing about how when we accept Christ as Savior, He puts a stamp on our head, marks us as His own, and we should live our lives like we are daughters of the King. (Okay, greatly paraphrased, but trying not to preach a sermon here....I have a story to tell!) But basically, we should treat our bodies as if we are temples of the Most High God, because we are.
If you know me at all, you know I have always been very self-conscious about my weight...even when I shouldn't have been. I wish I had known 20 years ago that true beauty had nothing to do with how much I weighed or what size clothes I wore. There have been times in my life when I was very thin and fit (and still thought I wasn't), and then there are times, like now, when I know my weight has gotten out of control, and while I know that "thin" does not always equal "beautiful", for me, "thin" would certainly equal "a better quality of life". I just think about how much better I could serve Him and my family if I felt better and all this weight wasn't putting so much extra pressure on my body. So now that I have made completely public something is very private, and embarrassing, to me, what I really want to share is how I have gotten my family into something that I am not quite sure how we are going to complete it.
In the midst of this work that God has been doing in me, I was at the chiropractor two weeks ago when he mentioned to me something that was coming up in the community on Labor Day. (My thoughts will be in parenthesis)
He handed me a brochure and said, "A lot of my patients are signing up for this triathlon on Labor Day."
(That's nice. I wonder what I am going to cook for supper?)
"Last year I got a bunch of us to all sign up so we could do it together."
(Why is he telling me this? Does he always wear those pants? Oooh, look! Sunshine outside the window.)
It's really not that hard. It's a 200 meter swim, an 8 mile bike ride, and a 1 1/2 mile run."
(Has this man taken one look at me, and doesn't he know I couldn't run a mile and a half if Freddy Kruger was chasing me? I wonder if my cute capris from last summer still fit me? I think it's almost time to change the oil in the van.)
"So this year, I thought we could all do it together and I 'll give everyone a T-Shirt and we'll come here after it's over and have a big cookout."
I said, "Ooooh....that sounds fun. Sign us up!!"
It's funny how a social gathering changes everything. :-)
Instantly, I thought it would be such a fun thing for our family to do together. We have all been wanting to get into better physical health, and maybe we need a goal!
So, that night when Jeff got home, I said, "Honey, what would you think about doing a triathlon?" (Notice how I kind of got this all out of order. Unfortunately, that's pretty common for me.)
He said, "Ummmm yeah, Dr. Bolton mentioned something about that to me."
"Doesn't that sound fun??!!??"
Well, he kind of looked at me strange and said, "Ummm....I don't know if 'fun' is the right word, but we can do it if you want to."
After thinking about it a little, I said, "Ummm, Jeff, I guess I am going to need some decent running shoes if we are going to train for a triathlon...and so will you. Come to think of it, Alyssa and Emilie don't have any either. Wait a minute...how are we going to train for a triathlon? We don't even own a bicycle? And, don't you have to know how to swim to do a triathlon? I don't swim very well."
By this time I was laughing hysterically.
Jeff got his sly grin on his face and said, "Umm, Baby, that's why you don't READY, FIRE, AIM." (Oh, but I soooo do that so often) He added, "I think all you heard when you were talking to Dr. Bolton was 'blah blah blah blah blah blah blah blah blah cookout and a free t-shirt."
Well, now I was really laughing hysterically. He was RIGHT!!!
So days went by and I kept thinking how we needed to go work out if we were going to get ready for this thing. Finally, a few days ago, we took the plunge. We were all just hanging around the house and I said, "Alright kids, get dressed. We are going to the 'Y'" . (Speaking of READY, FIRE, AIM......)
So once we were there and had the babies settled in "daycare" (as they like to call it), we headed up to the track. It was then that I actually looked at my children... I mean, really looked. Alyssa was dressed like she knew where she was going, but Emilie? Oh, Emilie. Fashion is what matters to her.She might have a rat's nest the size of a baseball in the back of her hair, and she may have pulled her clothes out of the bottom of the hamper, by by George, she'll look cute! She had on a cute shirt, black leggings, a hat, her yellow purse with sequin accents and zebra-striped flip flops with a big rhinestone on the toe. I wish I had a picture. I started walking around the track when out of the blue I hear, "FLAP FLAP FLAP FLAP FLAP FLAP FLAP FLAP FLAP FLAP" VERY loudly. I turn around to see Emilie, running like crazy to catch up with me, her arm bent up to hold her purse, hitting everyone she passed with her purse and grinning ear-to-ear.
It didn't help that I had to keep stopping to get Alyssa to help me figure out her MP3 player that she, so generously, let me borrow. And then my feet were KILLING me, so I kept having to stop to ride the bikes to give my feet a rest. During one of my stops, Emilie came over to ask me a question, and not paying attention to her surroundings (as usual) the pedal of my bike hit her knee. About that time Alyssa came around, just as I was asking Emilie, "Are you okay?" Alyssa turned a bright shade of three colors of red, black , and purple, and I said, "What's wrong with you?" She said,....well, I couldn't hear what she said...I could only see her mouth moving, so I said, "Alyssa, what is wrong with you? Emilie, are you okay." Alyssa responded, "MOM' YOU DON'T HAVE TO TALK SO LOUD!" oh. Whoops. Ear buds still in my ears.
So, at this point, Emilie is screaming wildly...and I do mean wildly. (She doesn't have the best control over her emotions.) Not only is Alyssa embarrassed to be with us, but now, her sister is making a scene, her mother is talking really loudly, and not only that, she is saying her name, with a southern accent, over and over, VERY LOUDLY! Needless to say, we drew a little attention to ourselves.
So after a grueling 7 minute workout, we left feeling a little defeated. Village People? Hillbillies? Rednecks? Just add any old label. I am sure the people around us thought all of those people had moved to town. :-) We just needed our Indian and construction worker costumes.
That's okay. We came with costumes of our own. :-)
Just to be clear, we are actually going to do the "sprint" type of triathlon (I think that's what it's called.) We did consider backing out because, to be honest, I am so out of shape, I don't see how I will ever get it together in time. Honestly, I am scared I am going to have a heart attack training for it. However, my brother assures me that since I was in such good shape at one time (between the Army and years of marching band) that my body will remember and it will be possible to do it. To throw in an extra incentive, he is going to try to be here for it. If you know me, you know how much I love my siblings, so to get to see one of them would be the greatest motivator ever! AND...apparently, they are going to have life guards and divers at the swim, so I won't drown. Comforting, don't you think?
So why do I tell you all this? To help me be accountable. Feel free to heckle me everyday about whether or not I am eating healthy and exercising. If you don't, I have my very own first-born right here in my house to crack the whip on us all.
Much love!
Jeannie
Wednesday, March 16, 2011
What we Know for Now
For some reason, I am having an extremely hard time with this post. It seems I am at no loss for words when I am in person and goofing off (which I soooo love to do), or when I want to share about my shortcomings and how God is using them in my life to make me more like Him. I can even talk all day about my four silly, beautiful little girls. Oh my, I love those girls.
But Clara.....how very hard it is to talk about what is wrong with Clara. I can tell you about her sweet little smile and her spunky personality. I can even tell you about her uneven little walk, that to some looks weird and strange, but to me, it is so much a part of who she is. Somehow it fits her personality....that baby hasn't let anything stop her yet, and I don't think she will ever let anything stop her without a fight. I certainly hope that is the case.
I have taken some time lately to read back through my blog. It is only about two years old (as hard as that is to believe), but there is a LOT of our journey here. I have become painfully aware of misinformation I have shared...never knowingly...but often because I was either misinformed, or I just posted too soon. When we first started on this journey with little Clara Faith, she was 6 months old and in every sense of the word, a puzzle. I knew very early on that something just wasn't quite right. Mothers know these things. In the early days, I had very little support. I had a handful of friends and some family that believed me and encouraged me, but mostly people just told me I was over exaggerating and she would be fine. I can be a little dramatic, but I am NOT one to run to the doctor at every turn. So when I felt something was wrong, I just knew something was wrong.
I have not shared this openly until right now, but Clara's pregnancy was very different for me. I have shared how difficult the first few months were, but even when that passed and we were in the "clear", I could not stop praying for that baby I was carrying. I wouldn't say I was worrying per se, I just felt an urgency to pray for my baby, even before I knew she was a girl. I can remember laying in my bed and praying until I had prayed so hard I was absolutely exhausted. I felt God lay specific things on my heart to pray for. The day she was born was such a blessed, happy day. I can remember few days that were ever that happy. But in the quiet of the afternoon, after everyone had left to go do "life", and it was just me and my girl in my room...still....I knew. I told a friend on the phone, "I am looking at this beautiful, perfect little girl, but I can't explain it. Something is just not right." I had no reason to feel that way. I just did. We both remember that conversation to this day.
In the first 6 months of her life, her head grew an inch per month. She began to look a little like one of those alien guys with the big ole brain. Other people would say, "Something is wrong with that kid's head." This began what has continued to be visits to a bazillion specialists and sub-specialists. Symptom after symptom, with nothing seemingly fitting together. Everyone we went to, and I do mean everyone, would say, "Well, she is a puzzle."
Thank you for that. Do I get a discount?
Her gross motor skills were increasingly delayed, and and she was increasingly in more and more pain. I can remember when she did start walking at 23 months old (and what a joyous day that was!), she would crawl around the house for the first few hours of the day because she hurt so badly. I am telling you...as a mother, that will rip your guts out. I will not belabor you with all of the details here, but trust me when I say, "Its been a long road." A road that so many of you have walked, cried, and prayed with us. Thank you for that.
Fast-forward to August of 2009 when we finally got in with, who we thought, was the best neuro-geneticist around. (This is where I am having a hard time typing...please forgive me if I have a hard time getting it all together.) I will not even tell you the sacrifices that were made by many for her to 1) be seen by him, and 2) undergo a very invasive procedure that he assured us was so reliable and accurate.
Four months later, we got a report back that said, "Possible/Probable Mitochondrial Disease" and "Oh, by the way, if you want to talk to me about the report, you have to wait two to three years." Yes, YEARS. Apparently he just likes the research. He is not so keen on the patients. Hindsight is 20/20, and I truly believe God allows everything for a reason, but if I had it to do over again, and knew what I know now....NEVER would I do that again. I will not elaborate further. Just trust me when I say that I would not recommend anyone to that doctor again for many, many reasons.
Clara's neurologist, whom we loved and Clara considered her boyfriend, did call us and go over the report and offered to answer any questions we had. The problem with that is that as wonderful as he is, his specialty is Muscular Dystrophy, not Mitochondrial Disease, so at this point in our lives, we were left to pretty much flounder. All the while, Clara was having metabolic crashes (that we later learned could be life threatening) but we didn't know it because no one had told us. I cannot express my thanks enough for the way God protected her in that year. In addition to all I was dealing with over her diagnosis, and it is a grieving process, it seemed that everything else fell apart around me at the same time. Not only were we trying to raise our support to go into ministry and sell our house, but we had friends whose lives were literally falling apart, not to mention, our little girl was struggling and we were getting nowhere in our attempt to help her, and we had three other precious girls to take care of. Emotionally I was a mess. I am still not sure I have totally recovered.
It was shortly after Clara's diagnosis that I was introduced to "Mito Mom". There will never be one day that goes by that I do not thank God for her and the friend that introduced us. She was immensely helpful and helped me understand so much of what was going on with our girl. I knew we needed help, I just didn't know where to go and no one seemed to know where to point us. Well, Mito Mom kept telling me I needed to see her doctor, and it was at a conference that I met this angel from above. I am telling you, Dr. Kendall is what a doctor should be. She stays up to date with the latest research, she has given the last 20+ years to the treatment of Mito patients, and she loves her patients. She has nothing to gain personally from labs that are ordered and she doesn't order things that are unnecessary. Clara had a crash just days before she saw Dr. Kendall for the first time, and not only did she prepare the hospital to let them know we were coming, she was on her way to a Women's Retreat with her church but gave me her cell phone number in case I needed her. That is genuine concern for a patient and her freaking-out parents.I will let you read about our meeting for yourself (if you have any stamina left after this ridiculously long post). For once, someone who knew what to look for took a step back and looked fresh at Clara. All of those "quirky things" that I had been questioning, "Are these puzzle pieces to something bigger?", she noticed without me saying anything and said, "Clara is one big puzzle and we just need to figure out how to fit the pieces together." Thank you, Lord. Tests that should have been done years earlier were finally being done, and we knew we were finally getting somewhere.
In the last two weeks we have gotten many answers. To be honest, I am not sure how to process them all, which is probably the reason for this ginormous post. I just felt the need to get it all out and process a little. If you are still here, thanks for letting me 'get it all out' on you. :-) The last time we saw Dr. Kendall , she told us that she wanted Clara to see a geneticist that specialized in bone diseases and she wanted her to see an endocrinologist. She felt we were possibly looking at a metaphyseal dysplasia ( a form of dwarfism), or rickets.
Rickets????
Isn't that what the sailors got who had been on the ship too long with no fruits and vegetables?
No, that's scurvy.
Rickets is what you get from a Vitamin D deficiency. Or so I thought. As it turns out there are 2 types. The Vitamin D deficiency type and a familial type.
I thought it sounded a little crazy, but I was willing to trust her and move forward.
It's a good thing we did.
We got a call from the U of M about a week and a half ago. We had been there about a week earlier to visit the endocrinologist and after spending a lot of time with us, she did a whole slew of blood work. ('Slew" is southern for 'a bunch of 'em'.) Now that I have 1) Talked to the endocrinologist on the phone. 2)Read the written report they sent me in the mail. and 3) Talked to Dr. Kendall on the phone, I feel at liberty to share some of what we have discovered.
She does NOT have a metaphyseal dysplasia. Thank you, Lord.
She does NOT have the Vitamin D deficiency type of Rickets. Um, ok.
She DOES have the familial type of Rickets (hypophosphatemic rickets, for my science friends who like to know) :-)...even though we don't have any of that in our family. Apparently it is an autosomal recessive gene....it just happened to kick in when Clara's little body was being formed.
She is being treated for it, and right now, they are hoping her bones will heal. Unfortunately, since it was found so late, there could be permanent damage to her bones. That is up in the air right now. We will just see how she does with the treatments. We go back in three months for another round of blood work and new x-rays to see if the bones are healing.
I don't know why these tests were not done sooner. They are simple tests and should have been included in the many, many other labs she had done. I don't know why a lot of things were not done differently, but here we are. I can honestly say that Jeff and I have done the very best we could do and never, ever gave up on her....and don't plan on giving up on her anytime soon. I have no regrets. God has grown us in so many ways through all of this, and I believe a lot of who Clara is....many of the wonderful parts of who she is...are because of the compassion she has learned in her suffering. That baby has suffered her entire life.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". Jeremiah 29:11
This has always been the verse that I have considered Clara's life verse (until she gets her own, anyway), and that promise has never rung more true to me than it does right now.
Where do we stand with the mitochondrial disease? I'm not sure. There will be more tests done and more decisions will have to be made. Her endocrinologist felt we were dealing with both diseases, but Dr. Kendall is not convinced. Clara has a lot of Mito symptoms that can also be explained with the Rickets, but there are still a few that cannot be explained away. She is ordering some more labs and some chromosomal studies that we will have done in June before our next appointment with her. She has told me before, but stressed it again today, that she has seen too many kids falsely diagnosed with Mito based on muscle biopsy results, and she has re-diagnosed these kids with something different, that had someone looked closer the first time, they would have found. She is also working with a scientist who is having great, and more accurate and specific, results with a cheek swab and a blood test. This is still in the trial phase, but she said the data that is coming back is VERY promising. That is exciting to me. It won't save Clara from all she has been through, and countless other precious children, but hopefully it will save children in the future from having to go through all of this.
Emotionally, I am not sure where I stand. In Dr. Kendall's words, I am hopefully optimistic, but I am not getting my hopes up until we know anything for sure. It has taken me so long to deal with the "Mito" diagnosis (and truthfully, I am not sure you ever totally deal with it), that I am afraid to even consider the possibility that she doesn't have it. Don't get me wrong, I would be nothing short of thrilled if that were the case, but I just cannot let myself get excited about that possibility and then have to grieve it all over again. I also want to make ABSOLUTELY SURE that she does not have Mito before we throw that diagnosis out. Can you imagine what a disaster that could be in the future? Not to mention, so much of our life has revolved around that diagnosis....it would be a hard thing to adjust to. I hope that doesn't sound too weird. In the meantime, I will just take care of my girls the best I can.
If you are still here, thank you for reading this whole, gargantuan post. I feel much better...guess I just needed to get this off of my chest.
I would really appreciate your continued prayers as we sort all of this out. Also, please remember to pray for the children and their families who are suffering, more than we can even fathom, with this disease. On Clara's worst day she feels better than many of these children on their best day. That breaks my heart.
Hugs and Love,
Jeannie
But Clara.....how very hard it is to talk about what is wrong with Clara. I can tell you about her sweet little smile and her spunky personality. I can even tell you about her uneven little walk, that to some looks weird and strange, but to me, it is so much a part of who she is. Somehow it fits her personality....that baby hasn't let anything stop her yet, and I don't think she will ever let anything stop her without a fight. I certainly hope that is the case.
I have taken some time lately to read back through my blog. It is only about two years old (as hard as that is to believe), but there is a LOT of our journey here. I have become painfully aware of misinformation I have shared...never knowingly...but often because I was either misinformed, or I just posted too soon. When we first started on this journey with little Clara Faith, she was 6 months old and in every sense of the word, a puzzle. I knew very early on that something just wasn't quite right. Mothers know these things. In the early days, I had very little support. I had a handful of friends and some family that believed me and encouraged me, but mostly people just told me I was over exaggerating and she would be fine. I can be a little dramatic, but I am NOT one to run to the doctor at every turn. So when I felt something was wrong, I just knew something was wrong.
I have not shared this openly until right now, but Clara's pregnancy was very different for me. I have shared how difficult the first few months were, but even when that passed and we were in the "clear", I could not stop praying for that baby I was carrying. I wouldn't say I was worrying per se, I just felt an urgency to pray for my baby, even before I knew she was a girl. I can remember laying in my bed and praying until I had prayed so hard I was absolutely exhausted. I felt God lay specific things on my heart to pray for. The day she was born was such a blessed, happy day. I can remember few days that were ever that happy. But in the quiet of the afternoon, after everyone had left to go do "life", and it was just me and my girl in my room...still....I knew. I told a friend on the phone, "I am looking at this beautiful, perfect little girl, but I can't explain it. Something is just not right." I had no reason to feel that way. I just did. We both remember that conversation to this day.
In the first 6 months of her life, her head grew an inch per month. She began to look a little like one of those alien guys with the big ole brain. Other people would say, "Something is wrong with that kid's head." This began what has continued to be visits to a bazillion specialists and sub-specialists. Symptom after symptom, with nothing seemingly fitting together. Everyone we went to, and I do mean everyone, would say, "Well, she is a puzzle."
Thank you for that. Do I get a discount?
Her gross motor skills were increasingly delayed, and and she was increasingly in more and more pain. I can remember when she did start walking at 23 months old (and what a joyous day that was!), she would crawl around the house for the first few hours of the day because she hurt so badly. I am telling you...as a mother, that will rip your guts out. I will not belabor you with all of the details here, but trust me when I say, "Its been a long road." A road that so many of you have walked, cried, and prayed with us. Thank you for that.
Fast-forward to August of 2009 when we finally got in with, who we thought, was the best neuro-geneticist around. (This is where I am having a hard time typing...please forgive me if I have a hard time getting it all together.) I will not even tell you the sacrifices that were made by many for her to 1) be seen by him, and 2) undergo a very invasive procedure that he assured us was so reliable and accurate.
Four months later, we got a report back that said, "Possible/Probable Mitochondrial Disease" and "Oh, by the way, if you want to talk to me about the report, you have to wait two to three years." Yes, YEARS. Apparently he just likes the research. He is not so keen on the patients. Hindsight is 20/20, and I truly believe God allows everything for a reason, but if I had it to do over again, and knew what I know now....NEVER would I do that again. I will not elaborate further. Just trust me when I say that I would not recommend anyone to that doctor again for many, many reasons.
Clara's neurologist, whom we loved and Clara considered her boyfriend, did call us and go over the report and offered to answer any questions we had. The problem with that is that as wonderful as he is, his specialty is Muscular Dystrophy, not Mitochondrial Disease, so at this point in our lives, we were left to pretty much flounder. All the while, Clara was having metabolic crashes (that we later learned could be life threatening) but we didn't know it because no one had told us. I cannot express my thanks enough for the way God protected her in that year. In addition to all I was dealing with over her diagnosis, and it is a grieving process, it seemed that everything else fell apart around me at the same time. Not only were we trying to raise our support to go into ministry and sell our house, but we had friends whose lives were literally falling apart, not to mention, our little girl was struggling and we were getting nowhere in our attempt to help her, and we had three other precious girls to take care of. Emotionally I was a mess. I am still not sure I have totally recovered.
It was shortly after Clara's diagnosis that I was introduced to "Mito Mom". There will never be one day that goes by that I do not thank God for her and the friend that introduced us. She was immensely helpful and helped me understand so much of what was going on with our girl. I knew we needed help, I just didn't know where to go and no one seemed to know where to point us. Well, Mito Mom kept telling me I needed to see her doctor, and it was at a conference that I met this angel from above. I am telling you, Dr. Kendall is what a doctor should be. She stays up to date with the latest research, she has given the last 20+ years to the treatment of Mito patients, and she loves her patients. She has nothing to gain personally from labs that are ordered and she doesn't order things that are unnecessary. Clara had a crash just days before she saw Dr. Kendall for the first time, and not only did she prepare the hospital to let them know we were coming, she was on her way to a Women's Retreat with her church but gave me her cell phone number in case I needed her. That is genuine concern for a patient and her freaking-out parents.I will let you read about our meeting for yourself (if you have any stamina left after this ridiculously long post). For once, someone who knew what to look for took a step back and looked fresh at Clara. All of those "quirky things" that I had been questioning, "Are these puzzle pieces to something bigger?", she noticed without me saying anything and said, "Clara is one big puzzle and we just need to figure out how to fit the pieces together." Thank you, Lord. Tests that should have been done years earlier were finally being done, and we knew we were finally getting somewhere.
In the last two weeks we have gotten many answers. To be honest, I am not sure how to process them all, which is probably the reason for this ginormous post. I just felt the need to get it all out and process a little. If you are still here, thanks for letting me 'get it all out' on you. :-) The last time we saw Dr. Kendall , she told us that she wanted Clara to see a geneticist that specialized in bone diseases and she wanted her to see an endocrinologist. She felt we were possibly looking at a metaphyseal dysplasia ( a form of dwarfism), or rickets.
Rickets????
Isn't that what the sailors got who had been on the ship too long with no fruits and vegetables?
No, that's scurvy.
Rickets is what you get from a Vitamin D deficiency. Or so I thought. As it turns out there are 2 types. The Vitamin D deficiency type and a familial type.
I thought it sounded a little crazy, but I was willing to trust her and move forward.
It's a good thing we did.
We got a call from the U of M about a week and a half ago. We had been there about a week earlier to visit the endocrinologist and after spending a lot of time with us, she did a whole slew of blood work. ('Slew" is southern for 'a bunch of 'em'.) Now that I have 1) Talked to the endocrinologist on the phone. 2)Read the written report they sent me in the mail. and 3) Talked to Dr. Kendall on the phone, I feel at liberty to share some of what we have discovered.
She does NOT have a metaphyseal dysplasia. Thank you, Lord.
She does NOT have the Vitamin D deficiency type of Rickets. Um, ok.
She DOES have the familial type of Rickets (hypophosphatemic rickets, for my science friends who like to know) :-)...even though we don't have any of that in our family. Apparently it is an autosomal recessive gene....it just happened to kick in when Clara's little body was being formed.
She is being treated for it, and right now, they are hoping her bones will heal. Unfortunately, since it was found so late, there could be permanent damage to her bones. That is up in the air right now. We will just see how she does with the treatments. We go back in three months for another round of blood work and new x-rays to see if the bones are healing.
I don't know why these tests were not done sooner. They are simple tests and should have been included in the many, many other labs she had done. I don't know why a lot of things were not done differently, but here we are. I can honestly say that Jeff and I have done the very best we could do and never, ever gave up on her....and don't plan on giving up on her anytime soon. I have no regrets. God has grown us in so many ways through all of this, and I believe a lot of who Clara is....many of the wonderful parts of who she is...are because of the compassion she has learned in her suffering. That baby has suffered her entire life.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". Jeremiah 29:11
This has always been the verse that I have considered Clara's life verse (until she gets her own, anyway), and that promise has never rung more true to me than it does right now.
Where do we stand with the mitochondrial disease? I'm not sure. There will be more tests done and more decisions will have to be made. Her endocrinologist felt we were dealing with both diseases, but Dr. Kendall is not convinced. Clara has a lot of Mito symptoms that can also be explained with the Rickets, but there are still a few that cannot be explained away. She is ordering some more labs and some chromosomal studies that we will have done in June before our next appointment with her. She has told me before, but stressed it again today, that she has seen too many kids falsely diagnosed with Mito based on muscle biopsy results, and she has re-diagnosed these kids with something different, that had someone looked closer the first time, they would have found. She is also working with a scientist who is having great, and more accurate and specific, results with a cheek swab and a blood test. This is still in the trial phase, but she said the data that is coming back is VERY promising. That is exciting to me. It won't save Clara from all she has been through, and countless other precious children, but hopefully it will save children in the future from having to go through all of this.
Emotionally, I am not sure where I stand. In Dr. Kendall's words, I am hopefully optimistic, but I am not getting my hopes up until we know anything for sure. It has taken me so long to deal with the "Mito" diagnosis (and truthfully, I am not sure you ever totally deal with it), that I am afraid to even consider the possibility that she doesn't have it. Don't get me wrong, I would be nothing short of thrilled if that were the case, but I just cannot let myself get excited about that possibility and then have to grieve it all over again. I also want to make ABSOLUTELY SURE that she does not have Mito before we throw that diagnosis out. Can you imagine what a disaster that could be in the future? Not to mention, so much of our life has revolved around that diagnosis....it would be a hard thing to adjust to. I hope that doesn't sound too weird. In the meantime, I will just take care of my girls the best I can.
If you are still here, thank you for reading this whole, gargantuan post. I feel much better...guess I just needed to get this off of my chest.
I would really appreciate your continued prayers as we sort all of this out. Also, please remember to pray for the children and their families who are suffering, more than we can even fathom, with this disease. On Clara's worst day she feels better than many of these children on their best day. That breaks my heart.
Hugs and Love,
Jeannie
Sunday, March 13, 2011
Less is More
I can't even tell you how many times I have started a post or thought about starting a post this past week. Have you ever had one of those times when God was working in your life in a HUGE way, but you just can't quite see what exactly He is doing?
That's where I am right now.
It's like He is plowing away at the garden of my soul, pulling up weeds over here, busting up rocks over here, and planting and watering seeds, but until that garden grows, I just don't know what's in it. If you know me well...or really, if you have ever spent ten minutes with me...you know I am not usually at a loss for words. My Mom used to say, "A fool tells all.", which is actually pretty Biblical. It's not word for word, but the idea is all there. That is one of my biggest areas of conviction right now. I love to talk to people and I love to blog, but I just wonder sometimes if I say too much. It is absolutely, without a doubt, always my intent to glorify God and give praise for what He has done and is doing in my life and the life of my family. I know that without Him, I would be an absolute mess. He is still working on me and has a long way to go; I just want to see Him in the journey and I want others to see Him, too. I have been made aware, however, that too many words often points the attention at the one talking instead of to the One that gave that voice in the first place. Ya know what I mean?
This has actually been a pretty frustrating week for me. Overall things are SOOO much better right now. It seems we are finally settling into life here. We are making friends, we're attending the same church every Sunday, and we are making (slow) progress in our house. But in spite of all that, I feel like I am losing my mind....literally. Have you ever been using a really slow computer and in an effort to get it to do what you want it to do you just keep clicking and clicking and clicking? I have....did I mention patience is one of those things God is working on daily? What usually happens is not what I want to happen. Instead of going faster, it gets overloaded and completely locks down. Well...that is my brain right now. I can't explain it any other way. I have been missing appointments, which is NOT like me. The "planner" in me has totally gone missing....if I think about something more than 5 minutes ahead, it is a miracle. My children even think I am losing it. I am having a hard time carrying on a conversation. I keep forgetting what the other person is talking about before they get to the end of their sentence. Can I just say that preteen girls do not have a lot of patience for that?
I guess life is finally catching up with me. It just feels like it is spinning out of control. I get to the end of every week and don't even know where Monday through Friday went. Jeff and I sat down together last week to try to figure out where to cut back. Unfortunately, there was not a whole lot we could cut out. Clara has physical therapy twice a week, and that's not going to change anytime soon. Emilie has an appointment every week. I have been doing two Bible studies and we did cut out one of those (that I am LOVING and getting so much from...that one breaks my heart). Throw in a few extra appointments (we are at some type of doctor at least once or twice a week), home school, and some church activities, and that's a pretty full week. So once again, it seems God wants less.
Less words is more holiness.
Less pride is more relationship with my heavenly Father.
Less stuff is more peace. (We are about to start another major clean-out.)
Less busyness is more time for my family.
Less chaos is more sanity.
Less worry is more room for prayer.
In so many ways, less is more. That is my life's theme for right now...at least until God gives me something different. :-) Maybe I will get my brain back in the process. :-)
We have had some very fun times in the last few weeks, though. I had someone ask one of my children over the Christmas break how we ever get any school work done because we seem to just be playing all the time. Well, let me tell you. We are getting our school work done (at least the most important parts), but our goal as a family since we have been here has been survival. Plain and simple. We knew that such a large move was going to take a huge toll on our family, and we wanted to do as much family bonding and exploring as we could when we got here. Not to mention, if I posted on Facebook and blogged about all the mundane stuff we do, I would have no friends left. No one wants to know all that stuff. :-)
I have a n absolute passion for raising girls who are holy and pure. I want them to want to be pure, not because I have given them a list of rules, but because they have their own relationship with God our Father and they understand that they are His temple and they know they are adored......that He is enthralled with their beauty (Ps. 45:11). I do not want them to give into the pressure to be more "sexual" in order to get the attention of a man. I guess the bottom line is, I just want them to know they are worth it. As I have read about this whole topic of raising girls this way, I have come to love the materials written by Dana Gresh called "Secret Keeper Girls". She has books for Moms, preteen girls, and teenage girls and they are fabulous. She also goes on tour. Recently, she was in a town near us so I took my two oldest. Alyssa was probably too old, but I wanted her to hear those principles from someone other than her mother. If you have girls, you know what I mean. Emilie, however, was just right. She already feels like a part of the club, so for her, it was like going to see Elvis Presley. They said it was for 8-12 year-olds, but there were some 7year-olds there and I thought it was totally appropriate for that age, too.
It was hard to get great pictures because of the lighting, but here is a little of what I have:
So much for "less is more". I will try to post more frequently so the posts are not so long. I do have some updates on the results of our last trip to the U of M that I will post soon. I wanted to make sure I had all the information before I posted.
Have a blessed day!!
Love,
Jeannie
That's where I am right now.
It's like He is plowing away at the garden of my soul, pulling up weeds over here, busting up rocks over here, and planting and watering seeds, but until that garden grows, I just don't know what's in it. If you know me well...or really, if you have ever spent ten minutes with me...you know I am not usually at a loss for words. My Mom used to say, "A fool tells all.", which is actually pretty Biblical. It's not word for word, but the idea is all there. That is one of my biggest areas of conviction right now. I love to talk to people and I love to blog, but I just wonder sometimes if I say too much. It is absolutely, without a doubt, always my intent to glorify God and give praise for what He has done and is doing in my life and the life of my family. I know that without Him, I would be an absolute mess. He is still working on me and has a long way to go; I just want to see Him in the journey and I want others to see Him, too. I have been made aware, however, that too many words often points the attention at the one talking instead of to the One that gave that voice in the first place. Ya know what I mean?
This has actually been a pretty frustrating week for me. Overall things are SOOO much better right now. It seems we are finally settling into life here. We are making friends, we're attending the same church every Sunday, and we are making (slow) progress in our house. But in spite of all that, I feel like I am losing my mind....literally. Have you ever been using a really slow computer and in an effort to get it to do what you want it to do you just keep clicking and clicking and clicking? I have....did I mention patience is one of those things God is working on daily? What usually happens is not what I want to happen. Instead of going faster, it gets overloaded and completely locks down. Well...that is my brain right now. I can't explain it any other way. I have been missing appointments, which is NOT like me. The "planner" in me has totally gone missing....if I think about something more than 5 minutes ahead, it is a miracle. My children even think I am losing it. I am having a hard time carrying on a conversation. I keep forgetting what the other person is talking about before they get to the end of their sentence. Can I just say that preteen girls do not have a lot of patience for that?
I guess life is finally catching up with me. It just feels like it is spinning out of control. I get to the end of every week and don't even know where Monday through Friday went. Jeff and I sat down together last week to try to figure out where to cut back. Unfortunately, there was not a whole lot we could cut out. Clara has physical therapy twice a week, and that's not going to change anytime soon. Emilie has an appointment every week. I have been doing two Bible studies and we did cut out one of those (that I am LOVING and getting so much from...that one breaks my heart). Throw in a few extra appointments (we are at some type of doctor at least once or twice a week), home school, and some church activities, and that's a pretty full week. So once again, it seems God wants less.
Less words is more holiness.
Less pride is more relationship with my heavenly Father.
Less stuff is more peace. (We are about to start another major clean-out.)
Less busyness is more time for my family.
Less chaos is more sanity.
Less worry is more room for prayer.
In so many ways, less is more. That is my life's theme for right now...at least until God gives me something different. :-) Maybe I will get my brain back in the process. :-)
We have had some very fun times in the last few weeks, though. I had someone ask one of my children over the Christmas break how we ever get any school work done because we seem to just be playing all the time. Well, let me tell you. We are getting our school work done (at least the most important parts), but our goal as a family since we have been here has been survival. Plain and simple. We knew that such a large move was going to take a huge toll on our family, and we wanted to do as much family bonding and exploring as we could when we got here. Not to mention, if I posted on Facebook and blogged about all the mundane stuff we do, I would have no friends left. No one wants to know all that stuff. :-)
I have a n absolute passion for raising girls who are holy and pure. I want them to want to be pure, not because I have given them a list of rules, but because they have their own relationship with God our Father and they understand that they are His temple and they know they are adored......that He is enthralled with their beauty (Ps. 45:11). I do not want them to give into the pressure to be more "sexual" in order to get the attention of a man. I guess the bottom line is, I just want them to know they are worth it. As I have read about this whole topic of raising girls this way, I have come to love the materials written by Dana Gresh called "Secret Keeper Girls". She has books for Moms, preteen girls, and teenage girls and they are fabulous. She also goes on tour. Recently, she was in a town near us so I took my two oldest. Alyssa was probably too old, but I wanted her to hear those principles from someone other than her mother. If you have girls, you know what I mean. Emilie, however, was just right. She already feels like a part of the club, so for her, it was like going to see Elvis Presley. They said it was for 8-12 year-olds, but there were some 7year-olds there and I thought it was totally appropriate for that age, too.
It was hard to get great pictures because of the lighting, but here is a little of what I have:
Alyssa pretending to be very excited to be there.
Emilie could not have been more excited. For one day, I was the "Mom of the Year"! She must have thanked me fifty times.
This was a contest between daughters and mothers. We were supposed to get our green balls to one side before the girls go their pink balls to the other. They made us moms sit down, though, so there was not much competition. :-)
Me and my two oldest girls. About five minutes later, we entered into one of the worst drives I have had since moving to the frozen tundra. God definitely protected us that night.
There were crazy fun times, and there were precious moments for moms and girls to share and pray with each other. I will always remember those moments. I am hoping they will bring back the tour again next year. If you want more information, you can visit them here.
This past weekend we marched in a parade! I have mentioned before that moving here was not just a geographical move, but a complete culture change. This parade was a perfect example! We have apparently moved to the land of the Irish; We are only about ten minutes from Notre Dame. They even turn the water in the river green after the parade, so it is a big event. As far as I know, there was never a St. Patrick's Day parade anywhere close to me in Georgia. Reins of Life, the ranch where Clara rides therapeutically, marched in the parade and asked us all to participate. I can honestly say I have not had that much fun in a long time! I have marched in a ton of parades, but I usually was singing and dancing, or had a piccolo stuck to my face. In this one, we walked and waved and gave out candy. Clara was grumpy again (not sure what this is all about lately) but the rest of us had a ball!
While we were decorating our wagon...actually, a wagon we borrowed from a sweet friend... some news people came by and asked if they could film us. They filmed us decorating, got close-ups of the girls, and then they they put a microphone on me. They interviewed me for about 5 minutes, but we don't get that channel so I have no idea what they broadcast. A friend DVR'd it for me and if I am on it and don't sound too much like a hillbilly, I'll order it and post it here. :-) I know I was cold and the wind was about to blow us away. This ought to be cute. :-)
The girls were cute, for sure.
Ready to roll!
From L to R: One of the volunteers at the ranch (I don't know her name), Donkey, and Ms. Sarah, Clara's instructor. The donkey stole the show. :-)
I will try to post more pictures later. When I arrived at the parade I realized that "someone" had borrowed my camera and I only had three pictures left. I borrowed one of the ROL cameras, so hopefully I can get some copies.
So much for "less is more". I will try to post more frequently so the posts are not so long. I do have some updates on the results of our last trip to the U of M that I will post soon. I wanted to make sure I had all the information before I posted.
Have a blessed day!!
Love,
Jeannie
Wednesday, March 9, 2011
A Beautiful Day in the Neighborhood
It was a beautiful day yesterday!! It got somewhere in the high 40's or low 50's and for us, it was like Spring! At one point I was in the kitchen and looked out of the window (that I LOVE) and saw all four girls in the yard playing "school". They had set up a chalkboard easel, four chairs, and had their mascot there, to boot. :-) It was absolutely precious. Although, I did have to wonder what they do when they play "school". What do you think their teacher imitation is like? I am sure I will never know. :-)
my neighbor?
Being very studious.
I wonder what they are looking at? A bird? A plane? Superman (Daddy) was still at work.
Clara loves that Beginner's Bible.
Proof that some girls never have to be taught how to accessorize. :-)
There's always time for recess. :-)
We love Lucy! She's just one of the girls now.
Won't you please?
Won't you please?
Please won't you be...
Bye neighbor!!
Have a blessed day!
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