Our precious boy turns six years old tomorrow. I complied the hilights of the past 12-18 months of his cute little face to celebrate his year!
Saturday, July 16, 2011
Thursday, July 14, 2011
Garrett Gave ME a Gift For His Birthday!!!!
Garrett's sixth birthday is Sunday.
I have pondered what to do for his special day, what type of cake to order or make, and where we might go. But truthfully, I am at a loss on so much of it. I feel like keeping things simple with our household, Grouchy's mom and our niece who are in town for the week, and maybe some of the people who help us care for him. But then I feel guilty not inviting the classmates from his special needs school. I am sure I will figure it all out.....soon!!!
Meanwhile, I had a very, very, very special moment with my little dude this morning. I left the house to run errands a little while before I needed to pick up Grouchy's mom and our niece, Sarah. I was heading out into the garage from the house, telling Garrett to go back inside and then go find my mom, Nina. He headed back into the house, then stopped and said in the cheeriest little voice, "I love you, Mom!" He has really never said this unprompted. He will just recently return an "I love you," sometimes, but usually has to be prompted to return it. But today, just out of the blue, it really hit me!! It was so precious, sweet, and yes, even meaningful! Sometimes he says it in return but it is just dry and planned, like just repeating us. But he really decided to say it first!!! Then, just when I was in amazement and ready to turn around and walk back to him and pick him up and eat him for lunch because he was so dang cute, he went even further. He said, "Wait, Mom, I need to give you a great big HUG!!" And he ran to me and threw his little 40 pound (yes, he is finally gaining again!!) self into my arms and gave me some very sweet time.
That's it. That's all I need for another year of parenting Garrett. That was like a huge bonus during a slim company year, finding a surprise $100 bill in a coat pocket in the fall, or just, well, just gratifying, fulfilling and wonderful. My emotional tank was filled!! I enjoyed getting this gift from my little man just before his sixth birthday. Thank you, Garrett. I love you too!!!
Godspeed to each of you and prayers for the Mito families and friends, especially the family of angel princess Eithene.
Clara-Leigh
I have pondered what to do for his special day, what type of cake to order or make, and where we might go. But truthfully, I am at a loss on so much of it. I feel like keeping things simple with our household, Grouchy's mom and our niece who are in town for the week, and maybe some of the people who help us care for him. But then I feel guilty not inviting the classmates from his special needs school. I am sure I will figure it all out.....soon!!!
Meanwhile, I had a very, very, very special moment with my little dude this morning. I left the house to run errands a little while before I needed to pick up Grouchy's mom and our niece, Sarah. I was heading out into the garage from the house, telling Garrett to go back inside and then go find my mom, Nina. He headed back into the house, then stopped and said in the cheeriest little voice, "I love you, Mom!" He has really never said this unprompted. He will just recently return an "I love you," sometimes, but usually has to be prompted to return it. But today, just out of the blue, it really hit me!! It was so precious, sweet, and yes, even meaningful! Sometimes he says it in return but it is just dry and planned, like just repeating us. But he really decided to say it first!!! Then, just when I was in amazement and ready to turn around and walk back to him and pick him up and eat him for lunch because he was so dang cute, he went even further. He said, "Wait, Mom, I need to give you a great big HUG!!" And he ran to me and threw his little 40 pound (yes, he is finally gaining again!!) self into my arms and gave me some very sweet time.
That's it. That's all I need for another year of parenting Garrett. That was like a huge bonus during a slim company year, finding a surprise $100 bill in a coat pocket in the fall, or just, well, just gratifying, fulfilling and wonderful. My emotional tank was filled!! I enjoyed getting this gift from my little man just before his sixth birthday. Thank you, Garrett. I love you too!!!
Godspeed to each of you and prayers for the Mito families and friends, especially the family of angel princess Eithene.
Clara-Leigh
Sunday, July 10, 2011
Garrett....Really, 6 Already???
Oh my goodness, this has really crept up on me!!! In less than 7 days, our little guy will be six years old. Wow! It has been said by every parent, I am sure, but I will say it again. It seems like he was born just yesterday, but then it seems like he has been with us FOREVER!! Grouchy's mom and Cousin Sarah are flying out here from Louisiana to help us celebrate Garrett's big day. About 45 minutes from our little ranch is an indoor trampoline park that Garrett and the girls (and most adults I have talked to!) love, so we will plan to go there on the day after his actually birthday to celebrate. My parents will be here, too, and Mom has already been shopping for presents for Garrett. She got him a really cool sprinkler, and he will love that!!
I don't think that it is sinking in yet. Six years old. He is small for six and certainly about 50% behind globally, but six. I think I will have to sleep on this before I can even begin to type emotions.
There is one emotion I am having, and likely it is somewhat due to seeing so many children lose their earthly fight (or win it, depending on how you look at it) with Mitochondrial Disease in the past year. I feel we need to go all out, make his day HUGE, because, well, because each year is a big deal. He has had a very good year as far as his health is concerned. Mentally he is making some strides. But time is passing. Disease is changing his body. His mitochondrial DNA is depleting. Those are the facts. My job is to manage his health and wellness and make the best of his days, regardless of his time on earth. His upcoming birthday makes me feel a little more pressure to make his day super-special. At the end of the day, will he even realize what has happened....maybe, but I feel I need to make all his little moments happy ones. He made it another year. We are blessed beyond measure.
The trip to the trampoline park will make him so happy. I thought about sneaking dozens of helium-filled balloons into his bedroom befor he wakes. He loves balloons and really loves to let them go into the sky. Maybe he could have 24 or so in his room and let them go one at a time. He also likes swimming at the YMCA, so maybe we can end the day at the Y swimming. Since the 17th is on a Sunday, we will just make his birthday on Monday to keep it simple. I need to contact a couple of his school buddies to invite them to join us. Wow, I need to get to work!!
SO there are my ponderings as of late!
If you have ordered a bracelet, I enclosed my address, or use the return address on the envelope to send the payment. No worries. I trust you guys, and I know you are going to make it happen! Just hope you enjoy the bracelets and maybe even steal the idea to help you raise money for Mito research and awareness.
And for my friend who asked about Lucy in the last photo. Long story, but she had to go. Addie liked her, but she broke her arm late 2009 coming off of Lucy, and we noticed the mare was pretty reactive and spooky, and decided we were not going to have anymore mares. We could not trust her personality. I sold her for near nothing only to learn now that she is apparently an amazing roping horse. We didn't need a roping horse, but interesting to know. I bought the grey from the same guy I about gave Lucy to......we won't talk dollar amounts as I will cry.......That said, I bought the pretty grey horse as a possible fit for me and for Addie, and he has been a big disappointment, so he is getting returned, and we are now looking again. He is very herd sour and reactive as well. I am starting to think we need an old, maybe even stiff, old gelding who isn't worried about the rest of the world. So there's the answer about Lucy. She was a beautiful girl, but a girl. Sorry, I am not usually sexist, but this time I must say I am a gelding-only kind of person!!!
Godspeed,
Clara-Leigh
I don't think that it is sinking in yet. Six years old. He is small for six and certainly about 50% behind globally, but six. I think I will have to sleep on this before I can even begin to type emotions.
There is one emotion I am having, and likely it is somewhat due to seeing so many children lose their earthly fight (or win it, depending on how you look at it) with Mitochondrial Disease in the past year. I feel we need to go all out, make his day HUGE, because, well, because each year is a big deal. He has had a very good year as far as his health is concerned. Mentally he is making some strides. But time is passing. Disease is changing his body. His mitochondrial DNA is depleting. Those are the facts. My job is to manage his health and wellness and make the best of his days, regardless of his time on earth. His upcoming birthday makes me feel a little more pressure to make his day super-special. At the end of the day, will he even realize what has happened....maybe, but I feel I need to make all his little moments happy ones. He made it another year. We are blessed beyond measure.
The trip to the trampoline park will make him so happy. I thought about sneaking dozens of helium-filled balloons into his bedroom befor he wakes. He loves balloons and really loves to let them go into the sky. Maybe he could have 24 or so in his room and let them go one at a time. He also likes swimming at the YMCA, so maybe we can end the day at the Y swimming. Since the 17th is on a Sunday, we will just make his birthday on Monday to keep it simple. I need to contact a couple of his school buddies to invite them to join us. Wow, I need to get to work!!
SO there are my ponderings as of late!
If you have ordered a bracelet, I enclosed my address, or use the return address on the envelope to send the payment. No worries. I trust you guys, and I know you are going to make it happen! Just hope you enjoy the bracelets and maybe even steal the idea to help you raise money for Mito research and awareness.
And for my friend who asked about Lucy in the last photo. Long story, but she had to go. Addie liked her, but she broke her arm late 2009 coming off of Lucy, and we noticed the mare was pretty reactive and spooky, and decided we were not going to have anymore mares. We could not trust her personality. I sold her for near nothing only to learn now that she is apparently an amazing roping horse. We didn't need a roping horse, but interesting to know. I bought the grey from the same guy I about gave Lucy to......we won't talk dollar amounts as I will cry.......That said, I bought the pretty grey horse as a possible fit for me and for Addie, and he has been a big disappointment, so he is getting returned, and we are now looking again. He is very herd sour and reactive as well. I am starting to think we need an old, maybe even stiff, old gelding who isn't worried about the rest of the world. So there's the answer about Lucy. She was a beautiful girl, but a girl. Sorry, I am not usually sexist, but this time I must say I am a gelding-only kind of person!!!
Godspeed,
Clara-Leigh
Saturday, July 9, 2011
Meet Our Remuda
The definition of remuda is actually a group of horses from which a rancher can choose a mount. The funny thing about my labeling this group a remuda is that only two of them are rideable, and of those two, one is a little iffy!! However, here is our remuda!!! I just liked the photo!
From left to right is Prince, Dusty, Smokey and Ernie.
That's it from Idaho tonight.
Have a beautiful Sunday and keep Mito families, especially Eithene's family, in your prayers!!
Godspeed,
Clara-Leigh
Friday, July 8, 2011
Another Child Goes To Heaven......Because of Mito
Sweet Eithene Rose went to be with Jesus today. I have been following her sweet mom's Blogspot page, and my has this little girl fought a tough fight against Mito and other health issues.
I can usually say something......well, almost anything, actually, but this most recent loss makes just way too many. I am angry. I have nothing nice to say....... nothing positive about Mito, anyhow. One was too many, but this past 12 months has brought child after child after child after child to be with Jesus because of this horrible disease. We MUST commit to raising funds and awareness to STOP Mitochondrial Disease.
Please be in prayer for Eithene's family. She is a precious angel now, and on earth she was perfectly beautiful with a heart of a fighter much more amazing than any man on earth.
Our love and thoughts and prayers are with Eithene's family tonight.
Godspeed,
CL
I can usually say something......well, almost anything, actually, but this most recent loss makes just way too many. I am angry. I have nothing nice to say....... nothing positive about Mito, anyhow. One was too many, but this past 12 months has brought child after child after child after child to be with Jesus because of this horrible disease. We MUST commit to raising funds and awareness to STOP Mitochondrial Disease.
Please be in prayer for Eithene's family. She is a precious angel now, and on earth she was perfectly beautiful with a heart of a fighter much more amazing than any man on earth.
Our love and thoughts and prayers are with Eithene's family tonight.
Godspeed,
CL
Saturday, July 2, 2011
So Long, Sweet Friend.....Until We Meet Again.
Yes, I firmly believe that dogs go to Heaven.
Today our yellow lab, Remington, or Remmi, as we called him, went to heaven. My dad came to our back door this morning as we were packing our things to take our girls and our visiting family from Louisiana to go hike to a waterfall. I could tell something was wrong because my dad wouldn't come in the house and wanted Grouchy AND me to BOTH come out. He informed us that a truck was on the irrigation ditch road behind the guest house and that Remmi ran after it and cleared the water ditch but ran right under the front tire of the truck. The driver stopped and saw my dad and explained what happened. Dad had tried to call Remmi when he went after the truck, but this was a common thing for Remmi to do......to protect and defend his farm and his people. The ditch road is dirt. Remmi had to jump over a 3 foot wide concrete ditch and then about a 1o foot wide dirt ditch with rushing water to get to the truck the way he did. He has done it a hundred times with no problems, and calling him off of the chase never worked. The man talked to my dad and offered to move him for us and told Dad he was dead. Uuuuugggghhhh, this hurts!!!! This dog was a rescue my sister in law Elizabeth convinced us to take. One of her friend's neighbors was taking him to the animal shelter.....just didn't have time for him, and so a family took him in and started searching for a home for him. He was a fine dog. He was light yellow, kind, gentle, but most of all he was Grouchy's best buddy, his truck riding partner. Remmi loved nothing more than a ride in the back of the pickup truck!!!! "Load up Remmi!!!!" broucht a literal smile to that sweet dog's face. He was our jogging buddy. He and Camper explored the desert valley and farms around us every day. It seems empty outside without seeing that big lump of hair and dog smiles wagging up to me. And then there is Addie's little dog, Camper. We are sad for him. He even looks sad.
I know, I know. Worse things can happen. I know. But for some reason, the loss of a dog is a big heartache for us. We get very close to our animals, especially rescued, huge, fun ones who are absolutely loving and forgiving to our children. Just yesterday my mom was missing Garrett for a minute and found Remmi in the garage lying on his stomach with Garrett sitting straddle on his back. Remmi was just watching out for his littlest person.
Addie and Ainslee are already asking when we can get another big dog so Camper isn't lonely. Addie keeps saying how sad it is to go outside and not see Remmi. There is a furry hole in our family tonight.
Tonight I thank God for the beautiful creatures He makes, and I know Remmi and all of our pets who we have lost will come running up to me in Heaven....if I get there!!!
Godspeed,
Clara-Leigh
"Your nakes is SO BIG!!"
A few nights ago while Garrett was in our bath tub, Grouchy walked in, planning to get into the shower. He changed his mind upon seeing Garrett in our big tub all alone and decided to join him. As Grouchy was taking off his clothes to get into the tub, Garrett looks up at his daddy and says, "Wow, Dad, your naked is SO BIG!!!!"
Needless to say, we got a huge laugh out of the whole ordeal!!!! Garrett never ceases to surprise us, and lately it has been in new, more positive ways.
Aunt Becca (Grouchy's youngest sister), Uncle Lee, Sophia and Louis arrived today, and we enjoyed an evening of cooking out, moving irrigation pipes and just letting the kiddos chill. Grouchy bought them a slip and slide, but it is a little rocky in the yard for that!!!
Tomorrow will be a hike and picnic at the local canyon and waterfall. My parents offered to keep Garrett here so we can have more freedom, and I cannot thank them enough.
Oh, a couple weeks ago while completely giddy over the fast my parents are here all summer, I told Garrett we would take the wheels off of their car so they cannot leave. Garrett laughed and laughed and laughed, then he began to obsess over that and got all upset at me saying we should not take their wheels off. I think he realized that those wheels are his ticket to numerous trips to play at the McDonalds playland and drink lots of vanilla milkshakes!!!! The kid has some smarts in that noggin of his!!
Please say a special prayer for those families seeking a correct diagnosis for their health issues whether mito related or not. It is just so hard for so many.
Godspeed,
Clara-Leigh
Needless to say, we got a huge laugh out of the whole ordeal!!!! Garrett never ceases to surprise us, and lately it has been in new, more positive ways.
Aunt Becca (Grouchy's youngest sister), Uncle Lee, Sophia and Louis arrived today, and we enjoyed an evening of cooking out, moving irrigation pipes and just letting the kiddos chill. Grouchy bought them a slip and slide, but it is a little rocky in the yard for that!!!
Tomorrow will be a hike and picnic at the local canyon and waterfall. My parents offered to keep Garrett here so we can have more freedom, and I cannot thank them enough.
Oh, a couple weeks ago while completely giddy over the fast my parents are here all summer, I told Garrett we would take the wheels off of their car so they cannot leave. Garrett laughed and laughed and laughed, then he began to obsess over that and got all upset at me saying we should not take their wheels off. I think he realized that those wheels are his ticket to numerous trips to play at the McDonalds playland and drink lots of vanilla milkshakes!!!! The kid has some smarts in that noggin of his!!
Please say a special prayer for those families seeking a correct diagnosis for their health issues whether mito related or not. It is just so hard for so many.
Godspeed,
Clara-Leigh
Friday, July 1, 2011
Busy, Busy, Busy
Busy. There, that's the short of it!
Since returning from Chicago for the Mito Symposium, I have been to the mountains in central Idaho with Ainslee and our two horses for 4-H horse camp....DREAMY!!! Well, except our new horse (the one I bought for Addie to hopefully grow comfortable enough to ride again someday) is not totally cool. Actually, I am hoping to return him...not cool. He is not a settled horse and was not fun to ride OR fall off of...long story!! However, Ainslee's horse Ernie was a SAINT!!!
My parents were complete saints to keep Garrett while we were at camp and keep the kiddos while I was in Chicago. Mom and Dad took a much-deserved break for the past three days and two nights to travel up to Stanley, Idaho, to the Sawtooth mountains, to explore. They came home saying it was the most beautiful place they have seen in the continental USA. Wow, and we go there next week. Which brings me to tomorrow!!
Tomorrow, Grouchy's youngest sister, Rebecca, and her husband and kiddos come for a week!!! We are so excited that no one want to go to sleep around here except Grouchy!!!! Rebecca and family will be here with us at the guest house until Tuesday when Grouchy, Addie, Ainslee and I load up in a caravan with them to go to Stanley, Idaho, to rent a house for two nights and enjoy some whitewater rafting, hiking, and amazing scenery!!! I am so excited!!! Today, Addie and Grouchy went to town to get ingredients for s'mores and meat to grill. The weather has been perfect for evening cooking out. Yum!!
As for the kiddos, Garrett is still doign weekly OT, and Addie is doing some private PT for her arm she broke a year and a half ago. She has decided she wants to stop gymnastics and do jazz dancing. I think that's a great fix for her!!! Ainslee's gymnastics coach has left the city program and will be starting at her coach's new, private gym soon. Addie is still scared to ride the horses, even Ernie, but she says she still wants to work the horses on the ground and train the young horses we just bought. SO we will see how that goes. I am happy she hasn't given up on a hobby in which she is SOOOO talented, but I am also enjoying her becoming her own little lady. So beautiful!!
SO there's the update for now. Nothing exciting going on from the medical area except Garrett is way constipated and I cannot get him regulated. Also, he got approved for the Medicaid Katie Beckett program, so that will helpful, hopefully!! And then today I scheduled Addie to see Dr. Koenig in Houston in September and see the cardiologist, pulmonologist, have a sleep study and have blood work and genetics testing. Should be a fun trip, especially if just Addie and I fly to Houston.
Goodnight sweet blog followers!!!
I promise more photos to come soon!!!!!
Godspeed,
Clara-Leigh
Since returning from Chicago for the Mito Symposium, I have been to the mountains in central Idaho with Ainslee and our two horses for 4-H horse camp....DREAMY!!! Well, except our new horse (the one I bought for Addie to hopefully grow comfortable enough to ride again someday) is not totally cool. Actually, I am hoping to return him...not cool. He is not a settled horse and was not fun to ride OR fall off of...long story!! However, Ainslee's horse Ernie was a SAINT!!!
My parents were complete saints to keep Garrett while we were at camp and keep the kiddos while I was in Chicago. Mom and Dad took a much-deserved break for the past three days and two nights to travel up to Stanley, Idaho, to the Sawtooth mountains, to explore. They came home saying it was the most beautiful place they have seen in the continental USA. Wow, and we go there next week. Which brings me to tomorrow!!
Tomorrow, Grouchy's youngest sister, Rebecca, and her husband and kiddos come for a week!!! We are so excited that no one want to go to sleep around here except Grouchy!!!! Rebecca and family will be here with us at the guest house until Tuesday when Grouchy, Addie, Ainslee and I load up in a caravan with them to go to Stanley, Idaho, to rent a house for two nights and enjoy some whitewater rafting, hiking, and amazing scenery!!! I am so excited!!! Today, Addie and Grouchy went to town to get ingredients for s'mores and meat to grill. The weather has been perfect for evening cooking out. Yum!!
As for the kiddos, Garrett is still doign weekly OT, and Addie is doing some private PT for her arm she broke a year and a half ago. She has decided she wants to stop gymnastics and do jazz dancing. I think that's a great fix for her!!! Ainslee's gymnastics coach has left the city program and will be starting at her coach's new, private gym soon. Addie is still scared to ride the horses, even Ernie, but she says she still wants to work the horses on the ground and train the young horses we just bought. SO we will see how that goes. I am happy she hasn't given up on a hobby in which she is SOOOO talented, but I am also enjoying her becoming her own little lady. So beautiful!!
SO there's the update for now. Nothing exciting going on from the medical area except Garrett is way constipated and I cannot get him regulated. Also, he got approved for the Medicaid Katie Beckett program, so that will helpful, hopefully!! And then today I scheduled Addie to see Dr. Koenig in Houston in September and see the cardiologist, pulmonologist, have a sleep study and have blood work and genetics testing. Should be a fun trip, especially if just Addie and I fly to Houston.
Goodnight sweet blog followers!!!
I promise more photos to come soon!!!!!
Godspeed,
Clara-Leigh
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