And I guess I should conclude this day with an explaination of how the trip turned out:
We made it to Whitefish Montana, to our friends' guest house and we are now
HAPPILY EVER AFTER!!!!!
Godspeed,
CL
Tuesday, June 29, 2010
Welcome to Paradise, Montana
Our flights were long but uneventful, considering my three traveling companions 9 and under. Addie and Ainsleee have always been the perfect travelers once over the age of three. Then Garrett, well, I would hve to type volumes of books to adequately chronicle our history of his traveling intolerance. Most of you know.
So we are headed to our friends' home in Whitefish, Montana, but the most reasonable place to arrive via airline was Spokane, Washington, so we flew there, rented a car.....and got a free upgrade when the nice young guy at the counter realized there were four of us with enough luggage for a month's stay.....to a new Chevy Tahoe WITH DVD PLAYER...THANK YOU GOD!!!!! The kids and I were SO excited!!
We had all been up since about 3:30 yesterday morning Eastern Time, but Ainslee and Garrett caught decent naps on the plane...THANK YOU AGAIN, GOD!!!!
They were champs waiting to get luggage, laying over two hours in Minneapolis, waiting for the rental car in line, loading the car....I was so proud of them.
Then we began our drive. The DVD hanging from the ceiling of the car was enough of a phenomenon to them that they were engaged for the first movie, Coraline, which I was later told by Addie was dark, scary, and was never to be viewed again by our family. Okay. But then the movie ended and the raging started. Keep in mind this is an hour and a half into a 4.5 hr drive. Oh, and it's a GORGEOUS drive. I have ridden this route before, but as a passenger. Speed limit is 75 in most places, but I can't see how you can drive that fast on those mountain pass roads.....ooooooooohhhhh..that's how they purge the idiots in Montana...BRILLIANT!!!!! Might need to try that in Louisiana!!! But they would just kill a bunch of innocent, safe drivers. There aren't enough people on the roads here to hit anyone!!!!!
Oh, I digressed......Let me back up. I let Ainslee quit taking her Miralax about 5 days ago. We skipped a day or two and she was doing fine.....having daily movement without drama....but then I made a really stupid decision, although at the time, I thought it might work. She has been on Miralax almost 5 years for constipation and withholding stool. We have backed off a little a few times with no success. We have had her tested for a nerve condition in the intestines, but that wasn't the problem. So we have done high fiber, Miralax, sometimes Senekot. And she moves, sometime soiling underwear a tad, but likely from being in a hurry not wiping well. And she's my busy one.....many times caught crossing legs to hold poop so she doesn't have to stop playing to miss action while pottying. More than you wanted to know, but I wanted to give you enough info to help describe the upcoming situation! So about three days ago, yes, right before our Montana month-long stay, ( later I will insert a photo of me holding the mother of the year trophy and flowers)I sat her down, fluffed her ego about how well she was doing without the medicine, how I thought since she was almost 8, she could just listen to her body better and instead of crossing legs, go to the potty when she feels her body do "that." And day one was fine, then IT started...It is the sludge that leaks out past a huge amount of built-up constipation when the person holds it in. She was soiling panties all day long....and I knew I had made a big mistake!!! SO I scolded her for holding her poop, put her in a pull-up, and put her back on Miralax, and this time, not in juice ever again, but in water, so she will WANT to do what she should and try to do all she can to get off the Miralax. She agreed, and then yesterday on our trip spent the day holding poop, crossing legs, soiling her pull ups with sludge....in planes, airports, public restrooms.....need I say more?? We went to the potty in two airports, one gas station and one McDonalds, and then we came to a tiny settlement in Montana about two hours into the 4.5 hour drive, which was rapidly turning out to be hell. Did I mention the views were breathtaking??
I had heard of this area and even been through it, but didn't remember just how majestic it was. It was something from a painting of the West: glowing green valley with a river at its center, fir trees then mountains jutting up to the heavens on each side of the valley....so perfect. Can I just stay???? Garrett had been raging for about an hour. Nothing we could say or do would stop the screaming, nothing. He made no sense when he talked. I'm tired.....fine, let's get to the house and you can sleep.....NO!!!!!!....I want tractor movie.....we put tractor movie on and get NOOOOOO, NOT TRACTOR!!!!!.....It you said anything to him, he would rage the opposite...no logic, completely miserable, no use trying. So when we pulled into the one block of Paradise, Addie was very fatigued, I could smell Ainlee's poop in her pull up, and Garrett was raging. I saw a little park and a train depot with a couple of engines there (Garrett's favorite!!) and we stopped. Right there with heaven's light shining on it was a port-o-potty!! SO I said that Ainslee had to get out now and get that huge ball of poop out or we were not going anywhere. Put my foot down, huh?? Tough girl, I am. I got everyone out and we enjoyed a walk to see the train. Garrett was so upset he didn't even care....just wanted me to hold him. I took Ainslee to the potty after Addie and Garrett were buckled back into the rental car, both very upset and tired, and Garrett raging....and Ainslee cried because she didn't want to sit on the potty and poop. She wanted to hold it until......college. It was about 84 degrees, but the port o potty was hotter, so I stood there with the door open to help, and no one could see her...shoot, no one lives there but the two people across the block at the bar!!!!! I almost went postal. I was losing my mind. Could see and hear Garrett raging, Addie crying, and I am standing there raising my voice at Ainslee to let her know that her options are to poop or have an enema when we get to the house in Whitefish. SO she "tries" but I can see she is actually putting her legs together and holding it. She is scared. She has hurt many times in the past in these situations. So much stool builds into a ball that it is painful upon exit........and I try to encourage her to get it over with. Shoot, I have been patient all day....and my hands smell like poop still from cleaning up my 7 year old for three days. And it's hot, and we are all exhansted, and I begin to yell at her, trying to tell her to GET IT OVER WITH SO WE CAN GET HOME!!!!!!!! And I lose it. I take the travel pack of wipes and the pull up in my hand and start hitting the port o potty door and growl.....teeth clenched, of course. Did I mention the rental car is right there and Garrett is RAGING!!!!! Here comes Addie and walks right in front of me into the port o potty and starts coaching her sister. She told Ainslee to put all of the negative (ME) away and stop saying she could not do it. Addie is sobbing, trying to encourage her to be positive and just DO IT!!!! I close the potty door and just walk away for a minute. It sounded like Addie was a doula coaching her little sister: Okay, push, 1-2-3...... And it's then I look up at this gorgeous sight before me, the valley, the mountains, the green pastures blowing in the breeze and there's the sign:
WELCOME TO PARADISE, MT!
Need I say more?
So we are headed to our friends' home in Whitefish, Montana, but the most reasonable place to arrive via airline was Spokane, Washington, so we flew there, rented a car.....and got a free upgrade when the nice young guy at the counter realized there were four of us with enough luggage for a month's stay.....to a new Chevy Tahoe WITH DVD PLAYER...THANK YOU GOD!!!!! The kids and I were SO excited!!
We had all been up since about 3:30 yesterday morning Eastern Time, but Ainslee and Garrett caught decent naps on the plane...THANK YOU AGAIN, GOD!!!!
They were champs waiting to get luggage, laying over two hours in Minneapolis, waiting for the rental car in line, loading the car....I was so proud of them.
Then we began our drive. The DVD hanging from the ceiling of the car was enough of a phenomenon to them that they were engaged for the first movie, Coraline, which I was later told by Addie was dark, scary, and was never to be viewed again by our family. Okay. But then the movie ended and the raging started. Keep in mind this is an hour and a half into a 4.5 hr drive. Oh, and it's a GORGEOUS drive. I have ridden this route before, but as a passenger. Speed limit is 75 in most places, but I can't see how you can drive that fast on those mountain pass roads.....ooooooooohhhhh..that's how they purge the idiots in Montana...BRILLIANT!!!!! Might need to try that in Louisiana!!! But they would just kill a bunch of innocent, safe drivers. There aren't enough people on the roads here to hit anyone!!!!!
Oh, I digressed......Let me back up. I let Ainslee quit taking her Miralax about 5 days ago. We skipped a day or two and she was doing fine.....having daily movement without drama....but then I made a really stupid decision, although at the time, I thought it might work. She has been on Miralax almost 5 years for constipation and withholding stool. We have backed off a little a few times with no success. We have had her tested for a nerve condition in the intestines, but that wasn't the problem. So we have done high fiber, Miralax, sometimes Senekot. And she moves, sometime soiling underwear a tad, but likely from being in a hurry not wiping well. And she's my busy one.....many times caught crossing legs to hold poop so she doesn't have to stop playing to miss action while pottying. More than you wanted to know, but I wanted to give you enough info to help describe the upcoming situation! So about three days ago, yes, right before our Montana month-long stay, ( later I will insert a photo of me holding the mother of the year trophy and flowers)I sat her down, fluffed her ego about how well she was doing without the medicine, how I thought since she was almost 8, she could just listen to her body better and instead of crossing legs, go to the potty when she feels her body do "that." And day one was fine, then IT started...It is the sludge that leaks out past a huge amount of built-up constipation when the person holds it in. She was soiling panties all day long....and I knew I had made a big mistake!!! SO I scolded her for holding her poop, put her in a pull-up, and put her back on Miralax, and this time, not in juice ever again, but in water, so she will WANT to do what she should and try to do all she can to get off the Miralax. She agreed, and then yesterday on our trip spent the day holding poop, crossing legs, soiling her pull ups with sludge....in planes, airports, public restrooms.....need I say more?? We went to the potty in two airports, one gas station and one McDonalds, and then we came to a tiny settlement in Montana about two hours into the 4.5 hour drive, which was rapidly turning out to be hell. Did I mention the views were breathtaking??
I had heard of this area and even been through it, but didn't remember just how majestic it was. It was something from a painting of the West: glowing green valley with a river at its center, fir trees then mountains jutting up to the heavens on each side of the valley....so perfect. Can I just stay???? Garrett had been raging for about an hour. Nothing we could say or do would stop the screaming, nothing. He made no sense when he talked. I'm tired.....fine, let's get to the house and you can sleep.....NO!!!!!!....I want tractor movie.....we put tractor movie on and get NOOOOOO, NOT TRACTOR!!!!!.....It you said anything to him, he would rage the opposite...no logic, completely miserable, no use trying. So when we pulled into the one block of Paradise, Addie was very fatigued, I could smell Ainlee's poop in her pull up, and Garrett was raging. I saw a little park and a train depot with a couple of engines there (Garrett's favorite!!) and we stopped. Right there with heaven's light shining on it was a port-o-potty!! SO I said that Ainslee had to get out now and get that huge ball of poop out or we were not going anywhere. Put my foot down, huh?? Tough girl, I am. I got everyone out and we enjoyed a walk to see the train. Garrett was so upset he didn't even care....just wanted me to hold him. I took Ainslee to the potty after Addie and Garrett were buckled back into the rental car, both very upset and tired, and Garrett raging....and Ainslee cried because she didn't want to sit on the potty and poop. She wanted to hold it until......college. It was about 84 degrees, but the port o potty was hotter, so I stood there with the door open to help, and no one could see her...shoot, no one lives there but the two people across the block at the bar!!!!! I almost went postal. I was losing my mind. Could see and hear Garrett raging, Addie crying, and I am standing there raising my voice at Ainslee to let her know that her options are to poop or have an enema when we get to the house in Whitefish. SO she "tries" but I can see she is actually putting her legs together and holding it. She is scared. She has hurt many times in the past in these situations. So much stool builds into a ball that it is painful upon exit........and I try to encourage her to get it over with. Shoot, I have been patient all day....and my hands smell like poop still from cleaning up my 7 year old for three days. And it's hot, and we are all exhansted, and I begin to yell at her, trying to tell her to GET IT OVER WITH SO WE CAN GET HOME!!!!!!!! And I lose it. I take the travel pack of wipes and the pull up in my hand and start hitting the port o potty door and growl.....teeth clenched, of course. Did I mention the rental car is right there and Garrett is RAGING!!!!! Here comes Addie and walks right in front of me into the port o potty and starts coaching her sister. She told Ainslee to put all of the negative (ME) away and stop saying she could not do it. Addie is sobbing, trying to encourage her to be positive and just DO IT!!!! I close the potty door and just walk away for a minute. It sounded like Addie was a doula coaching her little sister: Okay, push, 1-2-3...... And it's then I look up at this gorgeous sight before me, the valley, the mountains, the green pastures blowing in the breeze and there's the sign:
WELCOME TO PARADISE, MT!
Need I say more?
Monday, June 28, 2010
Doing the Willie Nelson
(typing way too early in the morning after way too little sleep, so no editing....so enjoy the humor in that...)
My parents always said we were "On the road again" like the old Willie Nelson song, so we adopted our own slogan for our traveling......Doing the Willie Nelson....we are on the road, in the bus, on the jet, train, etc., en route to Whitefish, Montana for the month of July!!! Doing the Willie Nelson!!!
About a year ago, as Grouchy's retirement approached, we had a dream of buying a motor home or camper and seeing the USA for 6 months. Those of you who know us "live" and many who have listened to me whine online, know Garrett is not so keen about the traveling, especially by road, so this had to be postponed.....or canceled....for now. Can you cancel something "for now?"
So we came up with another strategy: Grouchy is in Deadhorse, Alaska with his oil field consulting job, and he will meet us in Montana (there's a song here, too...WON'T YOU MEET ME IN MON-TA-NA...I WANNA SEE THE....). We will be there about a week before Grouchy arrives. Then we will stay until July 31, I think.....We are so excited to be returning to the guest house in the backyard of our dear friends' beautiful farm there. Jason and Sarah and kiddos lived near us in Virginia, and Jason and Oscar flew in sister squadrons while they were on two Navy cruises. We love them to death!! Problem is that they will only be there a couple of days before they travel overseas for the remainder of the month. BUT we will enjoy their lovely place and even try to ride a few of their horses for them...they have been too busy to ride in the past several years, and they have some horses we have ridden in the past.
Addie, Ainslee and I had a fun night last night as our good friend and neighbor, "Aunt Mary" brought us to the New Orleans Airport Hilton and enjoyed swimming and pizza with us!! We settled in for a 10 o'clock bedtime, but Mr. Sunshine Garrett was up singing at 3 AM!!!! We didnt' need to get up until 4, but he game me a laugh with his singing from the portable crib and then we had time to get repacked and for me to answer all his questions about how loud the airplane will be.....he is worried!! Can't blame him...he has grown up in horror of Grouchy buzzing the house in a jet!!! Again!! I am so good this morning that I got us here even earlier than I thought we needed to be.......I realized our flight is at 6:30, not 6...uuuugggh. Oh well, no napping, but we did get one yesterday, and I have prayed today will be smooth!! It's not the flying I anticipate to be a problem, it's the 4 hour rental car drive once we get to Spokane, WA!!!
That's about all the excitement we have here now!! We had a great weekend with good friends and Oscar's awesome family!! Thanks especially to Aunt Jen for all her help with packing, Garrett, taking the kids to Colton's party and just being a sweet sister to me. Thanks to DiDi for all of the childcare and love and food and time she shared with us. Thanks to Aunt Beth for taking our rather large, hairy yellow lab Remi for the month, and thanks to Aunt Becca for taking Addie's little mutt, Camper for the month......good luck with that one!!!! You guys are so supportive and helpful, and I cannot think of any better family I could have joined when I married!!!We will especially miss our time at DiDi's house while we are away. We look forward to a reunion at the end of July!!!!!
Also want to thank my girlfriends who have blessed me so richly......especially in this time of transition and uncertainty in our lives!! Lisa, I loved our late night and hot and sour soup. Charlene, I will miss watching you work out at our house....note I am not working out while she is!! Becs and Joles.....have fun racing without me. Vicki, I will miss you and your smiling tribe terribly, and Mary, well, you are really Aunt Mary after all!!! Kim, Tuesdays and Wednesdays will be, well, sad for a while!!! Love you!! And to my Mito Sisters online, I will hopefully have a good connection so will chat with y'all soon! Hugs to your little ones!!
Hugs and we will think of you guys as we soar the "friendly skies" today!!!! Hoping the skies remain friendly even while Garrett SCREAMS!!!
Godspeed,
CL
My parents always said we were "On the road again" like the old Willie Nelson song, so we adopted our own slogan for our traveling......Doing the Willie Nelson....we are on the road, in the bus, on the jet, train, etc., en route to Whitefish, Montana for the month of July!!! Doing the Willie Nelson!!!
About a year ago, as Grouchy's retirement approached, we had a dream of buying a motor home or camper and seeing the USA for 6 months. Those of you who know us "live" and many who have listened to me whine online, know Garrett is not so keen about the traveling, especially by road, so this had to be postponed.....or canceled....for now. Can you cancel something "for now?"
So we came up with another strategy: Grouchy is in Deadhorse, Alaska with his oil field consulting job, and he will meet us in Montana (there's a song here, too...WON'T YOU MEET ME IN MON-TA-NA...I WANNA SEE THE....). We will be there about a week before Grouchy arrives. Then we will stay until July 31, I think.....We are so excited to be returning to the guest house in the backyard of our dear friends' beautiful farm there. Jason and Sarah and kiddos lived near us in Virginia, and Jason and Oscar flew in sister squadrons while they were on two Navy cruises. We love them to death!! Problem is that they will only be there a couple of days before they travel overseas for the remainder of the month. BUT we will enjoy their lovely place and even try to ride a few of their horses for them...they have been too busy to ride in the past several years, and they have some horses we have ridden in the past.
Addie, Ainslee and I had a fun night last night as our good friend and neighbor, "Aunt Mary" brought us to the New Orleans Airport Hilton and enjoyed swimming and pizza with us!! We settled in for a 10 o'clock bedtime, but Mr. Sunshine Garrett was up singing at 3 AM!!!! We didnt' need to get up until 4, but he game me a laugh with his singing from the portable crib and then we had time to get repacked and for me to answer all his questions about how loud the airplane will be.....he is worried!! Can't blame him...he has grown up in horror of Grouchy buzzing the house in a jet!!! Again!! I am so good this morning that I got us here even earlier than I thought we needed to be.......I realized our flight is at 6:30, not 6...uuuugggh. Oh well, no napping, but we did get one yesterday, and I have prayed today will be smooth!! It's not the flying I anticipate to be a problem, it's the 4 hour rental car drive once we get to Spokane, WA!!!
That's about all the excitement we have here now!! We had a great weekend with good friends and Oscar's awesome family!! Thanks especially to Aunt Jen for all her help with packing, Garrett, taking the kids to Colton's party and just being a sweet sister to me. Thanks to DiDi for all of the childcare and love and food and time she shared with us. Thanks to Aunt Beth for taking our rather large, hairy yellow lab Remi for the month, and thanks to Aunt Becca for taking Addie's little mutt, Camper for the month......good luck with that one!!!! You guys are so supportive and helpful, and I cannot think of any better family I could have joined when I married!!!We will especially miss our time at DiDi's house while we are away. We look forward to a reunion at the end of July!!!!!
Also want to thank my girlfriends who have blessed me so richly......especially in this time of transition and uncertainty in our lives!! Lisa, I loved our late night and hot and sour soup. Charlene, I will miss watching you work out at our house....note I am not working out while she is!! Becs and Joles.....have fun racing without me. Vicki, I will miss you and your smiling tribe terribly, and Mary, well, you are really Aunt Mary after all!!! Kim, Tuesdays and Wednesdays will be, well, sad for a while!!! Love you!! And to my Mito Sisters online, I will hopefully have a good connection so will chat with y'all soon! Hugs to your little ones!!
Hugs and we will think of you guys as we soar the "friendly skies" today!!!! Hoping the skies remain friendly even while Garrett SCREAMS!!!
Godspeed,
CL
Saturday, June 26, 2010
Ainslee pee'd by the pool!!!
Ainslee is 7.
Ainslee is beautiful.
Ainslee is brilliant.....almost to a fault for a 7 year old.
Ainslee will do about anything to get attention.....even negative attention. (Hmmmm, should I take the hint?)
Wednesday, we had Kim's daughter Katie over by herself for a few hours. When the thunderstorms had passed for the second time, I let the girls swim. I was inside getting Garrett ready to join them when the door flew open and Katie says, in a giggly, shocked, embarrassed voice,"Miss Clara-Leigh (It you are not from the South, then you have no idea why she called me that.....it's just what we do here!!), Ainslee just pee'd outside!!!!"
Clara-Leigh: What?
Katie: She pee'd.
Clara-Leigh: Where?
Katie: By the pool?
Clara-Leigh: How?
Katie: She pulled her swimsuit to the side and just Pee'd.
Clara-Leigh: O.
AINSLEEEEEEEEE!!!!!!
Where did you pee?
Ainslee: Right here by the gate. (And there was the urine puddle, just in the middle of the area, running across the entire area now, where you have to walk to GET to the pool.)
Clara-Leigh: Why?
Ainslee: Addie does it all the time at DiDi's house. (DiDi is Grouchy's mom)
Clara-Leigh: Where?
Ainslee: By the diving board.
Clara-Leigh walks away, speechless, and if you have met me, know me, or have even read this blog once, you KNOW it takes a LOT to make me speechless........
I am still shaking my head over this one.
Godspeed,
CL
Ainslee is beautiful.
Ainslee is brilliant.....almost to a fault for a 7 year old.
Ainslee will do about anything to get attention.....even negative attention. (Hmmmm, should I take the hint?)
Wednesday, we had Kim's daughter Katie over by herself for a few hours. When the thunderstorms had passed for the second time, I let the girls swim. I was inside getting Garrett ready to join them when the door flew open and Katie says, in a giggly, shocked, embarrassed voice,"Miss Clara-Leigh (It you are not from the South, then you have no idea why she called me that.....it's just what we do here!!), Ainslee just pee'd outside!!!!"
Clara-Leigh: What?
Katie: She pee'd.
Clara-Leigh: Where?
Katie: By the pool?
Clara-Leigh: How?
Katie: She pulled her swimsuit to the side and just Pee'd.
Clara-Leigh: O.
AINSLEEEEEEEEE!!!!!!
Where did you pee?
Ainslee: Right here by the gate. (And there was the urine puddle, just in the middle of the area, running across the entire area now, where you have to walk to GET to the pool.)
Clara-Leigh: Why?
Ainslee: Addie does it all the time at DiDi's house. (DiDi is Grouchy's mom)
Clara-Leigh: Where?
Ainslee: By the diving board.
Clara-Leigh walks away, speechless, and if you have met me, know me, or have even read this blog once, you KNOW it takes a LOT to make me speechless........
I am still shaking my head over this one.
Godspeed,
CL
Friday, June 25, 2010
Wish I could diet like Garrett!
So Garrett has just finished Week 1 of the easing him onto a mitochondrial cocktail. This week he took CoQ10 daily at 8, 12 and 4 . He seemed to tolerate it well. He had a day of very dirty diapers after he started it, but he was due for one of those days. He did have two more pretty "moving" days after that, but hard to know if it was the CoQ10 or just the way his body was functioning. He seems to have more goofy energy this week. He has more loud outbursts at no promting, and I have more trouble with him kicking and acting out while I am changing his diapers and getting him to follow directions when I ask him to go somewhere in the house. Maybe that's all great stuff because it shows an increase in energy due to the CoQ10. But I have to admit that if this is how he is with additional energy......okay, I won't say it because I know that my baby having extra energy is a wonderful thing, especially on a cellular, survival level. Now we add Carnitor (L-Carnitine) next. Hope I spelled all that right. He will take it at 8, 12 and 4 also, so at least I already have the times together. I was very worried I would not be able to keep up with the dosing times, but I set three alarms on my phone, and that has worked great so far. Then there's the issue of keeping the supplements along with us when we are not home....now there's a logistical nightmare because we have NO schedule right now, so since we have been home all week, it hasn't been an issue yet. I found a neat cooler that is small. It has built-in gel packs sewn into two sides, and it is just large enough to hold two baby bottles. It is black, has a shoulder strap and a velcro stroller strap, and I found it at KMart, but I see online that WalMart and Target carry it. It is called the Playtex Fridge-To-Go Bottle Holder-Double. For some reason I can't attach the link...computer will not let me see the paste option!! Oh well. It's just large enough to hold 3-4 bottles of meds without being huge. It easily fits into another backpack or bag. The pharmacist told me that when we are away from home, if we keep them cooled, they will likely stay effective in the bottles for longer. This is important since some of the supplements come in large quantities, so they need to stay full strength for over a month once opened. Oh, and it is at least 93 degrees here every day, so if we go anywhere, there's a good chance they will be in the car in about 115 degrees if I can't take them in everywhere we go. For now the little cooler is great. Pop it in the freezer or fridge and use until needed....perfect!!! Now for me to remember to bring it with me when I go or send it with another person if they have him and then remember to get it back......more alarms might be piling up on my phone for that, too!! Uh-oh, what if I lose my phone? What if oil keeps spewing into the Gulf? What if each of my thousand bags flying to Montana with us weighs over 50 pounds? What if the grocery store stops carrying Laughing Cow Cheese original flavor? I digress.
So Garrett has not gained any weight in over a year and a half. He weighs 34.5 pounds.....had gotten up to 36, but is back down from that about 6 months ago. His eating habits are less than normal, to say the least. And for quite a while he was an eating champ. Now his favorites are macaroni mixed with corn, McDonalds chicken nuggets, Raisin Bran. Breakfast is almost nothing but soy milk. He will occasionally nibble on a waffle or his new true love RAISIN BRAN!!!! Oh, and he protests if there isn't a raisin in EVERY BITE. Did I mention sensory things are heightening.....like the riasin in each bite, more noise sensitivity and frustration..... But he is even slacking on the raisin bran lately. Then lunch he usually will not sit still to eat, and dinner.....uuuggh. He is drinking soy milk....a good bit, but looking pretty darn thin. Dr. K's nurse assures me this is normal for kids with MITO, but I just don't know how he can possibly keep going this this, or thinner. Of course I do not want to see him ever go through any more procedures, but right now I sometimes wish his feeding tube as back in his belly so I KNEW he was getting what he needed. He is being a real champ about taking his supplement, thus far, by mouth, so that's wonderful.
Today is GET READY day. Or I guess if you take the process to move this crew to Montana for a month as READY, SET, GO!, then today is SET....... I think. I guess it could be READY, but we are WAAAAAAAAAAY past READY to go up there. Now it's SET!!! Then it's GO on a 6 a.m. flight........I am certainly NEVER going to be READY for that!!
Here's a teaser for the next blog........"Hey, Miss Clara-Leigh, _________ just peed outside by the pool right where we have to walk!!!" Let your mind wander and see if you can determine who that might be!!! Hint: It WASN"T Garrett...........
Godspeed,
CL
So Garrett has not gained any weight in over a year and a half. He weighs 34.5 pounds.....had gotten up to 36, but is back down from that about 6 months ago. His eating habits are less than normal, to say the least. And for quite a while he was an eating champ. Now his favorites are macaroni mixed with corn, McDonalds chicken nuggets, Raisin Bran. Breakfast is almost nothing but soy milk. He will occasionally nibble on a waffle or his new true love RAISIN BRAN!!!! Oh, and he protests if there isn't a raisin in EVERY BITE. Did I mention sensory things are heightening.....like the riasin in each bite, more noise sensitivity and frustration..... But he is even slacking on the raisin bran lately. Then lunch he usually will not sit still to eat, and dinner.....uuuggh. He is drinking soy milk....a good bit, but looking pretty darn thin. Dr. K's nurse assures me this is normal for kids with MITO, but I just don't know how he can possibly keep going this this, or thinner. Of course I do not want to see him ever go through any more procedures, but right now I sometimes wish his feeding tube as back in his belly so I KNEW he was getting what he needed. He is being a real champ about taking his supplement, thus far, by mouth, so that's wonderful.
Today is GET READY day. Or I guess if you take the process to move this crew to Montana for a month as READY, SET, GO!, then today is SET....... I think. I guess it could be READY, but we are WAAAAAAAAAAY past READY to go up there. Now it's SET!!! Then it's GO on a 6 a.m. flight........I am certainly NEVER going to be READY for that!!
Here's a teaser for the next blog........"Hey, Miss Clara-Leigh, _________ just peed outside by the pool right where we have to walk!!!" Let your mind wander and see if you can determine who that might be!!! Hint: It WASN"T Garrett...........
Godspeed,
CL
Thursday, June 24, 2010
There's a naked lady behind every tree!!!!
Got your attention that time, I bet!!!
That's one of the things Grouchy had to brag to me about tonight from his latest employment venture.....He will be in the Arctic Circle on the north "slope" (which we have since learned is not sloped, but wickedly, desolately flat) of Alaska. His new job involves consulting regarding crew efficiency and safety processes in the oil field, both on land rigs and ocean rigs. This is his first Alaska trip, and he keeps saying over and over how interesting it is. What a new world to us all! We really never stop to think about all of the workings behind having the ability and freedom to purchase fuel for our vehicles and homes....perplexing!!! He sent photos of some Musk Oxen munching on the tundra.....green for only about 2 months of the year, oh, and not dark there at night this time of the year!! I seriously never thought this guy from Louisiana could EVER be the LEAST BIT excited to be in Alaska, really close to Santa...requests, anyone???
So when we had time to chat tonight, he told me that there is a naked lady behind every tree on the north slope......keep thinking......
Today I spent most of the day with Addie. She had an appointment to have two warts frozen...one on each hand, and it was much, much more pain than we anticipated. We must have been a sight in the pharmacy near the doctor's office. SHe had her hands both up in the air to keep the blood from pounding down into her hands making the pain worse, and there I stood in front of her by the pain relief shelf, tearing into a box of chewable children's Motrin and shoving them into her mouth as she quivered and cried and sobbed. I told her it looked like a hold-up of some sort, like I was forcing her to sitck up her hands and TAKE HER MEDICINE!!!!! What the doctor warned would be 9-10 minuted of pain following the procedure ended up being more like 3 hours of immense pain.....and Addie is my tough one. Next to a quick lunch with my sweet, sweet friend and adventure racing teammate Rebecca at my FAVORITE restaurant!!! I NEVER eat at buffetts, but this is a Mexican buffet named El Magey, and if you are EVER NEAR Siegen Lane off I-10 in Baton Rouge, Louisiana, you simply MUST try it!! SINFUL!!! Then we rushed over to another town nearby to the orthodontist. Addie will get her braces, or phase one of two phases of braces off on August 4! We ran a quick errand then to my friend's home to get Ainslee from her play date and then to rescue Aunt Jen from keeping Garrett all day. We then dropped off Garrett with Aunt Becca at our house where they swam together as us girls headed to see the musical Sleeping Beauty. It was not a Disney version, but it was really, really good!! We met friends there and then had ice cream at 10:30 at a McDonalds. Remind me to NEVER do that again....probably not safe. Not on Siegen Lane, anyway.
Addie and Ainslee were exhausted....and are very deep asleep in their beds. We all miss Grouchy so much!! Aunt Becca is hanging out with us the next few nights, so that's a blast, and a huge help. Most of all, she is tending Grouchy's beautiful veggie gardens. Such a farmer at heart!!! Love it!!
Busy day tomorrow. Grouchy's mom, DiDi is keeping the kiddos at her home tomorrow so I can get some things done...pack, clean, and on and on....and just be focused on those things.
So the naked ladies behind the trees where Grouchy is working....there are no trees.......
That's one of the things Grouchy had to brag to me about tonight from his latest employment venture.....He will be in the Arctic Circle on the north "slope" (which we have since learned is not sloped, but wickedly, desolately flat) of Alaska. His new job involves consulting regarding crew efficiency and safety processes in the oil field, both on land rigs and ocean rigs. This is his first Alaska trip, and he keeps saying over and over how interesting it is. What a new world to us all! We really never stop to think about all of the workings behind having the ability and freedom to purchase fuel for our vehicles and homes....perplexing!!! He sent photos of some Musk Oxen munching on the tundra.....green for only about 2 months of the year, oh, and not dark there at night this time of the year!! I seriously never thought this guy from Louisiana could EVER be the LEAST BIT excited to be in Alaska, really close to Santa...requests, anyone???
So when we had time to chat tonight, he told me that there is a naked lady behind every tree on the north slope......keep thinking......
Today I spent most of the day with Addie. She had an appointment to have two warts frozen...one on each hand, and it was much, much more pain than we anticipated. We must have been a sight in the pharmacy near the doctor's office. SHe had her hands both up in the air to keep the blood from pounding down into her hands making the pain worse, and there I stood in front of her by the pain relief shelf, tearing into a box of chewable children's Motrin and shoving them into her mouth as she quivered and cried and sobbed. I told her it looked like a hold-up of some sort, like I was forcing her to sitck up her hands and TAKE HER MEDICINE!!!!! What the doctor warned would be 9-10 minuted of pain following the procedure ended up being more like 3 hours of immense pain.....and Addie is my tough one. Next to a quick lunch with my sweet, sweet friend and adventure racing teammate Rebecca at my FAVORITE restaurant!!! I NEVER eat at buffetts, but this is a Mexican buffet named El Magey, and if you are EVER NEAR Siegen Lane off I-10 in Baton Rouge, Louisiana, you simply MUST try it!! SINFUL!!! Then we rushed over to another town nearby to the orthodontist. Addie will get her braces, or phase one of two phases of braces off on August 4! We ran a quick errand then to my friend's home to get Ainslee from her play date and then to rescue Aunt Jen from keeping Garrett all day. We then dropped off Garrett with Aunt Becca at our house where they swam together as us girls headed to see the musical Sleeping Beauty. It was not a Disney version, but it was really, really good!! We met friends there and then had ice cream at 10:30 at a McDonalds. Remind me to NEVER do that again....probably not safe. Not on Siegen Lane, anyway.
Addie and Ainslee were exhausted....and are very deep asleep in their beds. We all miss Grouchy so much!! Aunt Becca is hanging out with us the next few nights, so that's a blast, and a huge help. Most of all, she is tending Grouchy's beautiful veggie gardens. Such a farmer at heart!!! Love it!!
Busy day tomorrow. Grouchy's mom, DiDi is keeping the kiddos at her home tomorrow so I can get some things done...pack, clean, and on and on....and just be focused on those things.
So the naked ladies behind the trees where Grouchy is working....there are no trees.......
Bitter Sweet Goodbyes
A few years ago, I enjoyed a wonderful morning routine here of getting the kiddos up for breakfast and heading to the local YMCA just about 4 miles away, and getting a great workout with my dear, dear adventure racing teammates. Jolie, Rebecca and I would train together about an hour per day, then I would shower, fix my hair, and leave feeling like a human.....all while my kiddos were having fun in the playroom with other kiddos and a very kind staff. One day, I was letting the three kiddos run wild in the gymnasium on my way out, and this "new girl" approached me and said,"Hey, are you the one who homeschools?" I said I was, and we started chatting. Imagine that, ME chatting!? As we talked, we realized we each had two girls and a boy, and they were in the same birth order and were the same ages. Then I learned she was a nurse, and she asked me about Garrett's medical issues I had briefly mentioned. At this time, Garrett was just starting to walk, so was just over two years old. She shared with me that her two year old son, Barett (I know, Barett and Garrett, how cool is that?!?!) was two and a half but not yet able to run. She felt like something was not right with Barett, and her pediatricians in Texas has dismissed her concerns completely. Many of you who read this will have the MOMMY ALARM going off in your hearts and heads now. We talked a long while, then agreed we needed to get the kiddos together and talk homeschooling, etc. We didn't talk again right away, but when we parted, she ended up finding a pediatrician and taking Barett in for a checkup. She asked the pediatrician about her concerns that 2.5 year old Barett wasn't running, and the doctor orderd some labs. She got a call back just before thanksgiving, and the doctor asked her to come in. Barett's CK level, which in normal kids is 35-200, but Barett's was over 20,000. This clearly indicated that he had Duchenne Muscular Dystrophy. On that day, my friend Kim and her husband got the worst news. They went to the neurologist before they went home, and the neurologist confirmed the diagnosis. A week or so later, Grouchy's sister, Jennifer, called to tell me her neighbor/friend's friend who just moved here from Texas had gotten a horrible diagnosis for her son. I soon realized it was the girl I met at the gym that day, Kim. I got Kim's number from Jennifer, who got it from her friend, and I gave her a call. I left a message, and soon Kim called me back, and we had a long, long talk. I still remember pacing my driveway and feeling so helpless for her. The prognosis for boys with Duchenne is not good. It is always fatal, and lifespan is rarely past the early 30s. Here's MDA's quick description of DMD www.mdausa.org/disease/dmd.html . Another great site to learn more and make contributions is www.ppmd.org. Barett's body does not make the protien that makes muscles regenerate or rebuild. SO his muscles are always breaking down but becoming scar tissue. This happens to the entire body over time. Eventually, over time, he will lose the ability to walk, and then other, even more crucial muscles will fail......heart, muscles used to breathe...Most Duchenne boys never run, but with a lioness' courage, Kim has found THE BEST doctor and approach for managing Barett, and he is taking a steroid she has to have shipped in from out of the USA, and he is RUNNING and JUMPING!!!! This is truly amazing! Many, many times we looked at each other and laughed as we watched our children by the pool and had to continuously yell, "Barett, Garrett, STOPP RUNNING!!!" Steroids will also prolong some of the other weaknesses and hopefully allow him to do more important things like BREATHE, for longer as well. A week or so later, we got together with our combined 6 kids, and they all hit it off from the beginning. Kim parents much like we do, and her children are such a joy, and our friendship blossomed into a bond we will always have. A few asides I can't leave out....she also eventually created an adventure racing team with two of her friends who worked out with us at the YMCA. She ran a half marathon to raise money for Parent Project MD called Run For Our Sons to raise money for Duchenne MD research. I trained with her some, and then last year she made me run it with her in Disney World because....can you imagine....I can TALK THE WHOLE TIME to keep her from thinking about the running!! We had an absolute blast running and just BEING, and I know we will be running this race of life very close to one another, side by side, just like the half marathon. I have failed to mention that her husband and Grouchy hit it off and enjoyed "dude time" just chatting behind their pickup trucks and dropping doves during dove season. We have few couples who we both enjoy the others' company. Usually I have a close friend, but the guys don't really have that much in common, or Grouchy will have a good friend, but they live in New Orleans, which makes it hard for us to get together because of our location, or I just don't bond with the wife so much. But this has been such an amazing, fun relationship with Kim and her family because, as time permitted, which wasn't nearly often enough, we all enjoyed each other's company as well as watching our kiddos thrive together. We watched Barett and Garrett learn to run together, play together, and the funniest, lean on each other when they needed balance. Now that's not funny in most cases, but we couldn't help but giggle over watching two less than normal-strength kids try to lean on their pal who also needed help!!! Okay, it's sad, but we found humor in it somehow. We frequently argued who had it worse.....Kim knowing how Barett's story will go and end, and me not knowing how Garrett and Addie's will go, but knowing it wasn't going as it should.....and now we finally have a reason for Garrett's struggles, and we still argue, but now it's more surreal and confusing. Kim is a sister to me. She is a strong, kind, fun, tender, honest, loving Christian lady. I can be myself with her...completely...and in this season of life (and I think this season for Kim and me is eternal, somehow). I was so blessed to have her live two exits away. We have enjoyed two years of our girls taking piano lessons across from my house, thus TERRIFIC TUESDAYS where we get together at my house and play ALL DAY!!! It's been so much fun to look forward to each Tuesday and then party all day!! She has been here for my good days when I can carry her some, my normal days where we both just have a fun time watching the kiddos and talking and laughing A LOT, and my recent bad days, where she listened, identified, and never dismissed or downplayed the gravity of Garrett's recent diagnosis. She gave me what I needed.....every time. She isn't afraid to say,"I agree that he is losing body fat and looks like an Ethopian," and just yesterday, "Clara-Leigh, you are right, he has gotten weaker this month. He had a really hard time trying to climb into my van this morning." It's not that other people have not listened, loved, and supported me, but this has been they kind of support in identification that I needed, and honestly, I will always need. THANK YOU, Kim.
Now to the reason I gush about my dear friend....yes, I am about to cry typing this...The kiddos and I head to Montana Monday, and Kim and her family leave to house hunt in south Texas Friday. When we return from our trip and they from theirs, we will have three days before they move to Texas.....several hours from here. And as I have talked about here, we will be relocating as well. So while I have known our season of spending weekly time together would have to close, it's so much harder for me than I thought. My family's life is woven through hers and likewise. I know we will log many, many, many (sorry, Duke!) hours on the phones, and if us girls can get our way, we will be running the annual half marathon together to raise money for our respective causes. But still, a day of each week will be empty......
Gosh, I can't thank you enough, Kim!!! I love you to death. You know that. I will stop gushing now! Oh, and I should mention the YMCA closed....not sure why I need to mention that xcept that the day it closed, I think I cried, too. SO many memories and friendships made!
Prepare for more installments of Clara-Leigh has her three close friend sister-in-laws and friends here.....closest ever.....and yes, I will cry more.....
Godspeed,
CL
Now to the reason I gush about my dear friend....yes, I am about to cry typing this...The kiddos and I head to Montana Monday, and Kim and her family leave to house hunt in south Texas Friday. When we return from our trip and they from theirs, we will have three days before they move to Texas.....several hours from here. And as I have talked about here, we will be relocating as well. So while I have known our season of spending weekly time together would have to close, it's so much harder for me than I thought. My family's life is woven through hers and likewise. I know we will log many, many, many (sorry, Duke!) hours on the phones, and if us girls can get our way, we will be running the annual half marathon together to raise money for our respective causes. But still, a day of each week will be empty......
Gosh, I can't thank you enough, Kim!!! I love you to death. You know that. I will stop gushing now! Oh, and I should mention the YMCA closed....not sure why I need to mention that xcept that the day it closed, I think I cried, too. SO many memories and friendships made!
Prepare for more installments of Clara-Leigh has her three close friend sister-in-laws and friends here.....closest ever.....and yes, I will cry more.....
Godspeed,
CL
Sunday, June 20, 2010
Smiling Sunday
I go to sleep smiling tonight. Addie and Ainslee are in my bed with me giggling like the little girls they are.....angelic, truly!!! Now I have relaxed like I needed to, they are back to themselves....no bratty girl stuff, but the really funny, cheeky sisters they are, laughing and joking and having a fun, tired night!
Grouchy headed out for his job today. We miss him terribly, but we are taking a deep breath here and trying to enjoy the week. The house is in beautiful shape, all the repairs and updating complete, it's clean and shiny, and we pray it will have a new owner soon!! Idaho here we come....maybe.....someday.
We enjoyed church today, and our dear friend Mary went to lunch with us at our second favorite Mexican restaurant, and then Mary watched the kiddos while I took Grouchy to his drop-off for work. When I got home, Garrett was napping and Mary and the girls were sculpting a horse from clay. It was so beautiful!!!! It will be baked tomorrow, then painted. THANK YOU MARY!!!
Last night's fog has lifted. I feel like it is a new day, and I can use it or lose it. Prayers, prayers, prayers for you and your families tonight.
Thank you for yours.
Godspeed,
CL
Grouchy headed out for his job today. We miss him terribly, but we are taking a deep breath here and trying to enjoy the week. The house is in beautiful shape, all the repairs and updating complete, it's clean and shiny, and we pray it will have a new owner soon!! Idaho here we come....maybe.....someday.
We enjoyed church today, and our dear friend Mary went to lunch with us at our second favorite Mexican restaurant, and then Mary watched the kiddos while I took Grouchy to his drop-off for work. When I got home, Garrett was napping and Mary and the girls were sculpting a horse from clay. It was so beautiful!!!! It will be baked tomorrow, then painted. THANK YOU MARY!!!
Last night's fog has lifted. I feel like it is a new day, and I can use it or lose it. Prayers, prayers, prayers for you and your families tonight.
Thank you for yours.
Godspeed,
CL
Saturday, June 19, 2010
So It Really Is This Way
Very frustrated, trapped, blah feeling tonight. We decided, like we do every year at this time, to load up the family and drive about 5 minutes to watch the Louisiana High School Rodeo Finals. It's always such a high spot in our year. We get to relive some of our past favorite times in life, watch some great entertainment, but most of all, we get energized seeing all of these high schoolers work so hard to reach their goals. Some of them are on very expensive, professionally-trained horses, and then there are those like a sweet gal we have watched grow up here, Randi, who got a regular-seeming horse locally and has used her own blood, sweat and tears to come out at the top.....another year. It's just so awesome and motivating!!!!!!!
But let me rewind. We drive into the complex outside of our small town where the rodeo is held. It's a multi-million dollar facility with huge covered and partially enclosed riding arenas, hundreds of stalls, and more concrete than all the Wal Marts in America can boast. The huge 4-H barn is there, the old YMCA that had to close because of lack of interest by locals is there. There's a big trade show building. It's a very nice facility, to say the least. Then part of the place has many hook-ups for RVs and such. Well, we drove in, and there were a couple of "dudes" (for lack of manners in using any alternative phrases I would now prefer to use when referring to them) are walking across the parking lot as we drive into a parking space. When I open my door, they are almost 20 years from our car, and on Grouchy's side, but heading toward my side, but walking behind where we parked. And I hear the second "dude" say on his cell phone in almost a yell, "Where's my sh#&? You gotta bring me my f#%&@&# sh$%!" And I let it slide, but then as the kiddos are getting unbuckled and about to climb out of the car, he repeats it. Now this is where I have to think. The easy thing to do is to tell Grouchy and be the helpless, Southern Belle.....but then logic jumps in to save the day and reminds me that if Grouchy says something to the "dude" then there might be an altercation because the "dude" even walks with that arrogant, kick-your-tail strut....you know what I mean....So I really can't stand a fist fight, especially since there are two "dudes," Grouchy, three kids and me.....ugly....
So I decide the odds of the "dude" hitting me are far, far less, and if he did, he would die a slow, painful death at the hands of Grouchy...so I do it. I look right at him and say,"Hey, I am getting my kids out of the car here, can you please stop the language?" Ooooooooo....I get the pause in his cursing into his phone, the look of disbelief, then the eat-u-know-what-and-die look, and he proceeds to walk and talk loudly into the phone, but this time without the language....IT WORKED!!!!!!!!!!! THANK YOU GOD!!!!!!
Of course both of the girls wanted to know what was wrong. Grouchy heard my comment but not what the "dude" originally said that prompted my comment. Drama was averted and we went on to enjoy the rodeo.......or so we thought....
So we pay the $32 to get our family in, head to get some seats, and we run into many people we know from horse events, town, etc. I head off with Garrett to let him walk up and down the handicap ramps, one of his favorite autistic pastimes, and then Addie needs me to go somewhere with her, but when I try to leave the ramp with Garrett, he starts to freak out. Now I am fully aware of what freaking out is like for a toddler. I had one who did it a short while, and I have one who still does it at 7 sometimes, but it can always be solved, thwarted, stopped, somehow. But not with Garrett. Once he freaks, you are not going to have another pleasant moment for at least the next hour unless you let him go back to the thing you stopped him from in the first place. And there's no use in logic, just doesn't work. So I herd and trick Garrett into going with Addie and me to see some western jewelry, purses and such. Then we are back to the ramp. Mind you there is a whole rodeo going on just beyond where I can see from the ramp....the ramp's next destination is a street and parking lot, so there's no letting your eye off Garrett for a moment. I bribe Garrett from the ramp and over to where Grouchy and Ainslee and some friends have found some seats right neat the arena to watch the events. We try to sit....no way. Grouchy gives Garret his iPhone to let him play on it, and it works for a while. Oscar gets concerned about all the button pushing going on and gets it back. Then Garrett tries to dart off back to the ramp.....I ask if Grouchy can let him play with his phone....there are some local kids coming up in the events, and we have watched these kids grow up on horses and know their parents, and love to catch them in this rodeo because it is the STATE FINALS....big deal!!!!! He hands the iPhone to Garrett who is back to his "Rainmanning" of enjoying the music on the phone and pushing buttons over and over. All's well, right?????
Our friend's little girl goes to get a snow cone. We told our kids, before we even parked, that we were not buying anything to eat or drink. They both had donuts and soda today.....had a very healthy dinner of Vienna sausages and soybeans...how weird is that??...and we just thought it best to stop the dammage by not consuming junk at the rodeo. But Addie and Ainslee turned into whiners.....beggers.....pleading, whining, begging, begging, whining pleading......uuuugggh. It was rediculous. Wore me out. Then Addie starts off complaining of being too hot. We are under a huge fan, and I am comfy, but I know her body isn't like mine. So now I have to ask: Is she hot or just frustrated? I don't know!!!! Then she reminds me she didn't want to come.....but was having a blast chatting with her friend a minute before......before we said no to the snowcone...and it continues. They stand between my eyes and the kids I am dying to watch compete and WHINE!!!!!!!!!! I finally get them to sit, then Garrett wants to go up and down and up and down and up and down the ramp......again.....so we decide to leave. And I tell Grouchy I think the kids should repay their admission to us.....they at LEAST owe us that for torturing us there, right? I told the girls that had they seen themselved on video, they would not have believed it. I know if they had seen other children act like that, they would have pointed it out to me and said they had no idea how kids that age could act like babies...happened just LAST WEEK!!! So Grouchy handles the very calm lecture on the short trip home. I try to just breathe and not explode. I feel like the whole evening was a complete waste.....was suppose to be a Little House On the Praire kind of night, right? Grouchy going out of town for quite a while to work tomorrow, let's blow it out one last time and do something fun......but NO!!!!!! We get home and Grouchy goes in first, on a mission to finish packing for his work trip. The girls get out and I help Garrett out....still cannot get out of his 5 point harness by himself....or into it. And as I round the corner into the living room, I hear Grouchy getting very upset about something. It's his iPhone. While we let Garrett play with the iPhone so BOTH of us could actually sit and watch our local kids for, oh, maybe 15 minutes, Garrett managed to change the security code, thus locking up the phone. Grouchy goes postal, then I go postal, and Garrett LAUGHS, I am sure!!! The girls are scurrying around trying not to draw any foul, and we are all just tired and miserable. I end up venting to Grouchy about Garrett and how we can't ever seem to function like NORMAL people. Then it hits me like it hits me......blind sides me each time, about once every couple weeks....we are no longer normal people.
As a mom I know named her blog....My New Normal...it is so true. We should get a sitter if we would like to go sit and watch anything. We should not plan to both relax and enjoy something when Garrett is with us....it just can't happen. And it IS normal.....FOR US. This is hard for me. I am a very selfish person, and don't DARE comment otherwise here. I know me, and it's true. But this is us now.....raw, exposed, obvious, and long term. It's nights like this when I wonder how we will do this. Honestly, sometimes Garrett's mental issues far outweigh the possible physical issues he will likely face because he does seem okay, not normal, but not failing physically right now. But the mental, behavioral stuff....man, that's scary. What will this look like in a year, five, 20? What can we expect? I am reminded all the time that worry is a wasted emotion, but it's not worry, it's fear, selfishness, exhaustion.....and we have som much for which to be thankful, and I can say that, but regret I don't act and feel like it.
I love these children more than I can express. Garrett is my soul......but tonight my soul aches.
That's all. Thanks for listening. Not much to think about tonight, really....ha!!!!
I have been praying now for specific things to happen regarding our potential relocation to Idaho. I think it's time. Maybe I am just trying to escape the things I cannot change by making big changes I can accomplish. Maybe it's all a big joke....on me.
And I close tonight with my eyes wide open in fear, disbelief, but thankfulness....because it REALLY IS THIS WAY.
But let me rewind. We drive into the complex outside of our small town where the rodeo is held. It's a multi-million dollar facility with huge covered and partially enclosed riding arenas, hundreds of stalls, and more concrete than all the Wal Marts in America can boast. The huge 4-H barn is there, the old YMCA that had to close because of lack of interest by locals is there. There's a big trade show building. It's a very nice facility, to say the least. Then part of the place has many hook-ups for RVs and such. Well, we drove in, and there were a couple of "dudes" (for lack of manners in using any alternative phrases I would now prefer to use when referring to them) are walking across the parking lot as we drive into a parking space. When I open my door, they are almost 20 years from our car, and on Grouchy's side, but heading toward my side, but walking behind where we parked. And I hear the second "dude" say on his cell phone in almost a yell, "Where's my sh#&? You gotta bring me my f#%&@&# sh$%!" And I let it slide, but then as the kiddos are getting unbuckled and about to climb out of the car, he repeats it. Now this is where I have to think. The easy thing to do is to tell Grouchy and be the helpless, Southern Belle.....but then logic jumps in to save the day and reminds me that if Grouchy says something to the "dude" then there might be an altercation because the "dude" even walks with that arrogant, kick-your-tail strut....you know what I mean....So I really can't stand a fist fight, especially since there are two "dudes," Grouchy, three kids and me.....ugly....
So I decide the odds of the "dude" hitting me are far, far less, and if he did, he would die a slow, painful death at the hands of Grouchy...so I do it. I look right at him and say,"Hey, I am getting my kids out of the car here, can you please stop the language?" Ooooooooo....I get the pause in his cursing into his phone, the look of disbelief, then the eat-u-know-what-and-die look, and he proceeds to walk and talk loudly into the phone, but this time without the language....IT WORKED!!!!!!!!!!! THANK YOU GOD!!!!!!
Of course both of the girls wanted to know what was wrong. Grouchy heard my comment but not what the "dude" originally said that prompted my comment. Drama was averted and we went on to enjoy the rodeo.......or so we thought....
So we pay the $32 to get our family in, head to get some seats, and we run into many people we know from horse events, town, etc. I head off with Garrett to let him walk up and down the handicap ramps, one of his favorite autistic pastimes, and then Addie needs me to go somewhere with her, but when I try to leave the ramp with Garrett, he starts to freak out. Now I am fully aware of what freaking out is like for a toddler. I had one who did it a short while, and I have one who still does it at 7 sometimes, but it can always be solved, thwarted, stopped, somehow. But not with Garrett. Once he freaks, you are not going to have another pleasant moment for at least the next hour unless you let him go back to the thing you stopped him from in the first place. And there's no use in logic, just doesn't work. So I herd and trick Garrett into going with Addie and me to see some western jewelry, purses and such. Then we are back to the ramp. Mind you there is a whole rodeo going on just beyond where I can see from the ramp....the ramp's next destination is a street and parking lot, so there's no letting your eye off Garrett for a moment. I bribe Garrett from the ramp and over to where Grouchy and Ainslee and some friends have found some seats right neat the arena to watch the events. We try to sit....no way. Grouchy gives Garret his iPhone to let him play on it, and it works for a while. Oscar gets concerned about all the button pushing going on and gets it back. Then Garrett tries to dart off back to the ramp.....I ask if Grouchy can let him play with his phone....there are some local kids coming up in the events, and we have watched these kids grow up on horses and know their parents, and love to catch them in this rodeo because it is the STATE FINALS....big deal!!!!! He hands the iPhone to Garrett who is back to his "Rainmanning" of enjoying the music on the phone and pushing buttons over and over. All's well, right?????
Our friend's little girl goes to get a snow cone. We told our kids, before we even parked, that we were not buying anything to eat or drink. They both had donuts and soda today.....had a very healthy dinner of Vienna sausages and soybeans...how weird is that??...and we just thought it best to stop the dammage by not consuming junk at the rodeo. But Addie and Ainslee turned into whiners.....beggers.....pleading, whining, begging, begging, whining pleading......uuuugggh. It was rediculous. Wore me out. Then Addie starts off complaining of being too hot. We are under a huge fan, and I am comfy, but I know her body isn't like mine. So now I have to ask: Is she hot or just frustrated? I don't know!!!! Then she reminds me she didn't want to come.....but was having a blast chatting with her friend a minute before......before we said no to the snowcone...and it continues. They stand between my eyes and the kids I am dying to watch compete and WHINE!!!!!!!!!! I finally get them to sit, then Garrett wants to go up and down and up and down and up and down the ramp......again.....so we decide to leave. And I tell Grouchy I think the kids should repay their admission to us.....they at LEAST owe us that for torturing us there, right? I told the girls that had they seen themselved on video, they would not have believed it. I know if they had seen other children act like that, they would have pointed it out to me and said they had no idea how kids that age could act like babies...happened just LAST WEEK!!! So Grouchy handles the very calm lecture on the short trip home. I try to just breathe and not explode. I feel like the whole evening was a complete waste.....was suppose to be a Little House On the Praire kind of night, right? Grouchy going out of town for quite a while to work tomorrow, let's blow it out one last time and do something fun......but NO!!!!!! We get home and Grouchy goes in first, on a mission to finish packing for his work trip. The girls get out and I help Garrett out....still cannot get out of his 5 point harness by himself....or into it. And as I round the corner into the living room, I hear Grouchy getting very upset about something. It's his iPhone. While we let Garrett play with the iPhone so BOTH of us could actually sit and watch our local kids for, oh, maybe 15 minutes, Garrett managed to change the security code, thus locking up the phone. Grouchy goes postal, then I go postal, and Garrett LAUGHS, I am sure!!! The girls are scurrying around trying not to draw any foul, and we are all just tired and miserable. I end up venting to Grouchy about Garrett and how we can't ever seem to function like NORMAL people. Then it hits me like it hits me......blind sides me each time, about once every couple weeks....we are no longer normal people.
As a mom I know named her blog....My New Normal...it is so true. We should get a sitter if we would like to go sit and watch anything. We should not plan to both relax and enjoy something when Garrett is with us....it just can't happen. And it IS normal.....FOR US. This is hard for me. I am a very selfish person, and don't DARE comment otherwise here. I know me, and it's true. But this is us now.....raw, exposed, obvious, and long term. It's nights like this when I wonder how we will do this. Honestly, sometimes Garrett's mental issues far outweigh the possible physical issues he will likely face because he does seem okay, not normal, but not failing physically right now. But the mental, behavioral stuff....man, that's scary. What will this look like in a year, five, 20? What can we expect? I am reminded all the time that worry is a wasted emotion, but it's not worry, it's fear, selfishness, exhaustion.....and we have som much for which to be thankful, and I can say that, but regret I don't act and feel like it.
I love these children more than I can express. Garrett is my soul......but tonight my soul aches.
That's all. Thanks for listening. Not much to think about tonight, really....ha!!!!
I have been praying now for specific things to happen regarding our potential relocation to Idaho. I think it's time. Maybe I am just trying to escape the things I cannot change by making big changes I can accomplish. Maybe it's all a big joke....on me.
And I close tonight with my eyes wide open in fear, disbelief, but thankfulness....because it REALLY IS THIS WAY.
Friday, June 18, 2010
MITO Cocktail, End of Day One
This evening ended Garrett's first day of easing into the "mitochondrial cocktail." He began the CoQ10 from Epic For Health yesterday at 4 pm. Three doses each day, 8 am, 12 pm, and 4 pm, and 100 mg each dose. My sweet sister in law, Jennifer, got the mail, tended the garden, walked the dogs, got our house in selling shape twice, AND even got Garrett's CoQ10 flavored for him!!!!! THANK YOU!!!!! He loves it!!! Grape, it is, for the rest of the supplements when we start them!!! Next is Carnitor, three times daily. We have that on order with the local pharmacy. Garrett showed no obvious negative effects. He has been having #2 in his diaper all day long, and while he will have it lots sometimes, it's usually not over the entire day. Hhhhhmmmmmmm, maybe that's from the CoQ10 and that would be a good side effect, not a bad one!!! I was worried about how I would remember the doses. We only give him one med daily now, and it was always at breakfast. So I set my phone with three daily alarms, and it worked great. Now, next trick is to learn to plan ahead and take the supplements on the road when we will not be home for doses.....not so easy!! It's so hot right now that I cannot just take it in the car with me.....if you have ideas, post them to me here in comments!!! Might involve a cooler.....but the meds do not HAVE to be refrigerated. So that's good!
Our house has been on the market about a month, and we have had many people come to tour it. We have a contingency contract on it now, but it is still on the market, active. We had another showing today. We feel like we are nearing the end of the house-selling stress. It is priced right, and we really hope the people who have the contingency contract sell their home quickly. It is on over an acre, and our realtor previewed it and said it is a beautiful home. My prayer is that their home sells quickly, and they move here and enjoy this place. And of course we pray we can move on a house in the Nampa Valley in Idaho soon!!! There were three great prospects!!! We miss the awesomely refreshing days we enjoyed there. It is so hot and muggy here now.....but we spent a really fun time today with family at Groucht's parents' home.....uuugggh....so torn!!!
Thank you for following our nutty-ness once again. Love and peace.
Godspeed,
Clara-Leigh
Our house has been on the market about a month, and we have had many people come to tour it. We have a contingency contract on it now, but it is still on the market, active. We had another showing today. We feel like we are nearing the end of the house-selling stress. It is priced right, and we really hope the people who have the contingency contract sell their home quickly. It is on over an acre, and our realtor previewed it and said it is a beautiful home. My prayer is that their home sells quickly, and they move here and enjoy this place. And of course we pray we can move on a house in the Nampa Valley in Idaho soon!!! There were three great prospects!!! We miss the awesomely refreshing days we enjoyed there. It is so hot and muggy here now.....but we spent a really fun time today with family at Groucht's parents' home.....uuugggh....so torn!!!
Thank you for following our nutty-ness once again. Love and peace.
Godspeed,
Clara-Leigh
Thursday, June 17, 2010
Attention Passengers.....Home On the Range Delayed
Title says it all. The seller of the house in Idaho countered our offer, and we are letting it all just die.....again. Did this same thing last month.....long story. So we have an offer on our house with a contingency, and our house is still being shown. It was shown three times while we were in Idaho, and then it was shown last night, and there is another showing tomorrow afternoon. This may be a repeat showing....always a good thing! So we feel so thankful we didn't rush into anything and stick our necks out too far on the Idaho house. We like the place a lot, but there are two other propertied that were also AMAZING, and had livestock facilities already built. One had the neatest year...ever, and was a mile from a 55+ community with a gold course....Nina and Pop (my parents) would love the town houses/condos there!! It was beautiful! So we will let this house close, then make an offer for a home in Idaho at that time. We are frustrated we spent a couple thousand dollars traveling to Idaho to see this house we like, and the sellers still cannot seem to read our seriousness about their place. We were willing to move 2300 miles with three kids and horses to rent until our home sells. Oh well, they need the purchase complete, and I can understand that, too. Everything will work out beautifully for us. We know God is watching our back....and front!!!!!
Tomorrow, Garrett has to go to the local hospital's lab to have a STAT ammonia test run. His level was 80 (high) in the fall, and then Dr. Koenig's nurse called me this week because it was 120 this time. This test is a very sensitive test, and the nurse thinks it migh tbe a lab problem, so we will repeat in the morning....THANK GOODNESS not having to go to Houston!!!
Today Garrett' got his Medic Alert bracelet that Dr. Koenig recommended. He also started his first of 4 supplements that make up his "mitochondrial cocktail." Started with CoQ10, and each of the next sets of two weeks, we will add another one until all 4 are on board. Tow of the supplements are three times daily, one is twice daily, and one is once daily. Aunt Jen was sweet enough to take the first bottle of the CoQ10 to the local pharmacy to have flavoring added. It is grape, and Garrett seemed to be okay with it!!
My eyes are crossing. SOOOOO happy to be blogging from my own bed, finally!!
Working on the details of moving with the military office that deals with the moves. Need to at least get signed up and prepared.
Will be working to get the house back into the museum shape it has to be in for the showing tomorrow!!
Godspeed!
CL
Tomorrow, Garrett has to go to the local hospital's lab to have a STAT ammonia test run. His level was 80 (high) in the fall, and then Dr. Koenig's nurse called me this week because it was 120 this time. This test is a very sensitive test, and the nurse thinks it migh tbe a lab problem, so we will repeat in the morning....THANK GOODNESS not having to go to Houston!!!
Today Garrett' got his Medic Alert bracelet that Dr. Koenig recommended. He also started his first of 4 supplements that make up his "mitochondrial cocktail." Started with CoQ10, and each of the next sets of two weeks, we will add another one until all 4 are on board. Tow of the supplements are three times daily, one is twice daily, and one is once daily. Aunt Jen was sweet enough to take the first bottle of the CoQ10 to the local pharmacy to have flavoring added. It is grape, and Garrett seemed to be okay with it!!
My eyes are crossing. SOOOOO happy to be blogging from my own bed, finally!!
Working on the details of moving with the military office that deals with the moves. Need to at least get signed up and prepared.
Will be working to get the house back into the museum shape it has to be in for the showing tomorrow!!
Godspeed!
CL
Wednesday, June 16, 2010
One night rest then......
Just about to turn in for the night. Grouchy and I flew from Idaho back to Alabama where my dad picked us up from the airport and took us to my parents' home. We were reunited with our three precious rug rats. Wonderful joy to hold these little people again! We have missed them. My dad's father has cancer. It is a recent diagnosis. He is 90, and the physician thinks it is treatable, and probably curable. My grandfather started radiation treatments this week. We visited him last week. He was a little weak, but looked great. He got a little emotional (tears in his eyes) when we left this time. It was hard to say bye.
We took the kiddos up to visit my 95 year old grandmother and all her precious dog children. It was a brief visit, but I had the funniest conversation with my grandmother, who we call Buddy. My mother has a horse with Cushings Disease. Cushings is a disorder of the pituitary gland that causes muscle wasting, and excess hair growth....not just a little extra hair, but the horse has about 4 inch long hair ALL OVER HIS BODY!!! Out of his ears, all over his face, his legs look like a Buswiser Clydesdale's legs! And he is very, very thin, but he feels great, and the vet says to let him enjoy life. He still trots up to us when we visit. He winnies and acts like a young guy, and his eyes are still pretty and bright. So he has no idea anything is wrong! When I got here to Alabama the other evening, we went to visit the horse, and he was stressing in the heat. So we wet him with cold water and began to use some clippers to shave him to a short coat to help him stay cooler. Okay, had to set up for the story, so here's the funny:
The other night we had planned to go visit Buddy, my 95 year old grandmother, but when we saw the horse stressing, we canceled our visit with my grandmother to care for the horse. SO I am sitting on the couch with my grandmother today, and we are having a nice visit while the kiddos are playig with all the dogs around, and my grandmother says, "Clara-Leigh, I sure wish I had been able to have you over sooner with more notice so we could have had a meal with you here at the house." I said, "I am so sorry. We went to see Mom's horse, and he wasn't doing well. He has this Cushings Disease deal, a problem with the pituitary gland, and it has caused him to lose weight, and he has this hair that is at least 4 inches long and is sooooo curly. He looks so odd." My grandmother asks,"Is it just a big beard?" And I said,"No, it's all over his body, especially his ears, and his face, and his legs look so huge and furry. So we shaved his whole body so he will not overheat, but now Mom has to spray him with sunscreen so his skin will not burn in this hot sun since he has had so much hair that protected him until now!" My grandmother says, "Well, that is crazy! Are those neighbor ladies still cooking for him and taking good care of him visiting all the time?" It is at this point I realized she was thinking the whole time that we were talking about my dad's dad who has cancer! So we rolled in laughter!!! My grandmother was trying to picture my grandfather as some sort of werewolf!!! My mom and dad loved the story, so I thought you might get a good, free laugh from it as well!
That's all for tonight. We have not heard back from the offer on the house yet. Our realtor believes the sellers might be formulating a counter offer as they did last time. I am praying for an agreement we can all sign off on.
Godspeed,
CL
We took the kiddos up to visit my 95 year old grandmother and all her precious dog children. It was a brief visit, but I had the funniest conversation with my grandmother, who we call Buddy. My mother has a horse with Cushings Disease. Cushings is a disorder of the pituitary gland that causes muscle wasting, and excess hair growth....not just a little extra hair, but the horse has about 4 inch long hair ALL OVER HIS BODY!!! Out of his ears, all over his face, his legs look like a Buswiser Clydesdale's legs! And he is very, very thin, but he feels great, and the vet says to let him enjoy life. He still trots up to us when we visit. He winnies and acts like a young guy, and his eyes are still pretty and bright. So he has no idea anything is wrong! When I got here to Alabama the other evening, we went to visit the horse, and he was stressing in the heat. So we wet him with cold water and began to use some clippers to shave him to a short coat to help him stay cooler. Okay, had to set up for the story, so here's the funny:
The other night we had planned to go visit Buddy, my 95 year old grandmother, but when we saw the horse stressing, we canceled our visit with my grandmother to care for the horse. SO I am sitting on the couch with my grandmother today, and we are having a nice visit while the kiddos are playig with all the dogs around, and my grandmother says, "Clara-Leigh, I sure wish I had been able to have you over sooner with more notice so we could have had a meal with you here at the house." I said, "I am so sorry. We went to see Mom's horse, and he wasn't doing well. He has this Cushings Disease deal, a problem with the pituitary gland, and it has caused him to lose weight, and he has this hair that is at least 4 inches long and is sooooo curly. He looks so odd." My grandmother asks,"Is it just a big beard?" And I said,"No, it's all over his body, especially his ears, and his face, and his legs look so huge and furry. So we shaved his whole body so he will not overheat, but now Mom has to spray him with sunscreen so his skin will not burn in this hot sun since he has had so much hair that protected him until now!" My grandmother says, "Well, that is crazy! Are those neighbor ladies still cooking for him and taking good care of him visiting all the time?" It is at this point I realized she was thinking the whole time that we were talking about my dad's dad who has cancer! So we rolled in laughter!!! My grandmother was trying to picture my grandfather as some sort of werewolf!!! My mom and dad loved the story, so I thought you might get a good, free laugh from it as well!
That's all for tonight. We have not heard back from the offer on the house yet. Our realtor believes the sellers might be formulating a counter offer as they did last time. I am praying for an agreement we can all sign off on.
Godspeed,
CL
Tuesday, June 15, 2010
Offer on Home On the Range
Today we made an offer on the home on the range in Idaho. It's a little complicated since we have not closed on the sale of our home in Louisiana, but it's a step closer. Today was BEAUTIFUL. Yesterday it got pretty warm out here mid-day....83 degrees. But today it never got much above 70 because it was a little cloudy. Grouchy joked that "if it gets any hotter, I'll have to take off my long sleeves!" I wore a denim jacket with a sun dress today, and I was very comfortable. We also talked about how much we would love to see Addie out here. When we have taken her to Colorado and Wyoming in the spring, she is an energetic, excited little butterfly. Even her facial tone and expression seem just better....more tone, less wilting. We wished like crazy that she could have been with us today.
So we made the offer on "the" acreage with the home and guest home. We should know something by tomorrow at 5 pm. We fully expect a counter, and we pray we can get things to come to a mutually agreeable set of terms. I had been praying for specific things to work out, but then last night I realized I need to pray for guidance and peace in decision making so we had clarity of thought and didn't leave out any details. This morning, we had peace, and now we pray for patience and wait for a response.
In the morning I have to get up at the "doesn't make CL happy" hour of 4:30...YIKES!! We fly to Denver, have a three hour layover, then on to Birmingham to meet my dad and head to my parents' home for one more night before our drive back to Louisiana. Gosh we miss those kiddos!! We looked for souvenirs and ended up with stickers, really good-priced silly band bracelet thingies, a set of straws with connectors (yes, a billion tiny pieces and I am having to keep our house in perfect order for showing.), and my FAVORITE.....the largest colorful marshmallows I have EVER SEEN!! HUGE!! Must be 5 times larger than the large ones we roast over the fire!!!! So no logo items, neat, regional gifts, but giant marshmallows!! But that's what they love....well, maybe they will be a close second to bubble wrap! There's nothing cooler than the excitement kids have over the simple things!!
Tonight I pray for us and for you to appreciate the little things, the normal, the usual, and know it's not all a neat accident!!!
Godspeed,
CL
So we made the offer on "the" acreage with the home and guest home. We should know something by tomorrow at 5 pm. We fully expect a counter, and we pray we can get things to come to a mutually agreeable set of terms. I had been praying for specific things to work out, but then last night I realized I need to pray for guidance and peace in decision making so we had clarity of thought and didn't leave out any details. This morning, we had peace, and now we pray for patience and wait for a response.
In the morning I have to get up at the "doesn't make CL happy" hour of 4:30...YIKES!! We fly to Denver, have a three hour layover, then on to Birmingham to meet my dad and head to my parents' home for one more night before our drive back to Louisiana. Gosh we miss those kiddos!! We looked for souvenirs and ended up with stickers, really good-priced silly band bracelet thingies, a set of straws with connectors (yes, a billion tiny pieces and I am having to keep our house in perfect order for showing.), and my FAVORITE.....the largest colorful marshmallows I have EVER SEEN!! HUGE!! Must be 5 times larger than the large ones we roast over the fire!!!! So no logo items, neat, regional gifts, but giant marshmallows!! But that's what they love....well, maybe they will be a close second to bubble wrap! There's nothing cooler than the excitement kids have over the simple things!!
Tonight I pray for us and for you to appreciate the little things, the normal, the usual, and know it's not all a neat accident!!!
Godspeed,
CL
Monday, June 14, 2010
Home on this range?
Home, home on the.....range.....but which range???
Today Grouchy and I spent the day with our realtor, and now very fun friend, Maureen. She is such a kind person, and she even laughed at our jokes no one else seems to think are funny!! PLUS she has horses and has planned to show us around riding all over the area should we move out here.
I do have to take a moment to let you know the kind of stress Grouchy endured ALL DAY today. Grouchy is a fighter pilot, recently retired, but once a fighter pilot, always a fighter pilot. And he flew for 20 years in planes by himself.....no other pilot, no navigator, no anyone else, but Bitchin' Betty, the computer voice in the jet he flew....but she's not real, we think.....
So here is Grouchy all day in a car with two women, Maureen and me, who are non-stop talkers. He always prefers to drive when we are together unless he is exhausted or has a headache or we are driving in an area with lots of tractors, in which case I have to drive or we end up in a ditch! But today he spent the whole day in the passenger with not only a woman driver, but a woman REALTOR, lots-of-talking driver, at that!!! We had some funny driving moments, but all in all it was just fine. Grouchy cannot speak for himself right now because he is so exhausted that we came back to the Hampton Inn, and he is snoring beside me!!!!!
We narrowed our search down to one place after looking at 5 homes on land today. It's a place with smaller acreage...less than 20 acres...and has a beautiful guest house. The main house is all one story except a bonus loft over the kitchen and garage. It is a lovely place, has room for horses, growing hay, an arena, and even a pool someday. Has a great front porch, a neat, large back patio, We got all stressed when we got back into our car today. Then we both realized we have not been praying about our decision making process. So we talked about things a little at dinner but then agreed we need to spend the night in conversation with God.
Does God translate snoring? Because if he does, Grouchy is having a major one-sided "discussion" right now!
Signing off to get on my knees and listen.....
Godspeed,
CL
Today Grouchy and I spent the day with our realtor, and now very fun friend, Maureen. She is such a kind person, and she even laughed at our jokes no one else seems to think are funny!! PLUS she has horses and has planned to show us around riding all over the area should we move out here.
I do have to take a moment to let you know the kind of stress Grouchy endured ALL DAY today. Grouchy is a fighter pilot, recently retired, but once a fighter pilot, always a fighter pilot. And he flew for 20 years in planes by himself.....no other pilot, no navigator, no anyone else, but Bitchin' Betty, the computer voice in the jet he flew....but she's not real, we think.....
So here is Grouchy all day in a car with two women, Maureen and me, who are non-stop talkers. He always prefers to drive when we are together unless he is exhausted or has a headache or we are driving in an area with lots of tractors, in which case I have to drive or we end up in a ditch! But today he spent the whole day in the passenger with not only a woman driver, but a woman REALTOR, lots-of-talking driver, at that!!! We had some funny driving moments, but all in all it was just fine. Grouchy cannot speak for himself right now because he is so exhausted that we came back to the Hampton Inn, and he is snoring beside me!!!!!
We narrowed our search down to one place after looking at 5 homes on land today. It's a place with smaller acreage...less than 20 acres...and has a beautiful guest house. The main house is all one story except a bonus loft over the kitchen and garage. It is a lovely place, has room for horses, growing hay, an arena, and even a pool someday. Has a great front porch, a neat, large back patio, We got all stressed when we got back into our car today. Then we both realized we have not been praying about our decision making process. So we talked about things a little at dinner but then agreed we need to spend the night in conversation with God.
Does God translate snoring? Because if he does, Grouchy is having a major one-sided "discussion" right now!
Signing off to get on my knees and listen.....
Godspeed,
CL
Sunday, June 13, 2010
Today Grouchy and I spent the entire day in western Idaho looking around. The Nampa Valley area is just perfectly beautiful. The valley is surrounded by high desert mountains. Down in the valley the land is rolling with irrigation ditches and rivers and the likes bringing life+water to the crops. We saw fields of alfalfa for hay, alfalfa for seed, onions, sugar beets, types of grain like wheat, along with apples, grapes, and tree farms of ornamental trees. I am sure we didn't see everything there in the way of crops, but that was a lot!! We saw dairy farms, horse ranches, cattle ranches, sheep, goats and an occasional llama . The little towns were each unique with lots of little hometown, small town America stores, restaurants, and very nice people. We worshipped at a small church in Homedale where we were included in partaking of the second Sunday potluck lunch, even though we didn't bring a pot of anything!! The parishioners were so sweet. One couple in particular came to this area much the same way we did.....had a dream, wanted a change, moved here with small kids, and will never leave. Everyone we talk to loves it here. And we can see why.We had researched areas around the United States where we thought the climate would offer cooler temperatures than our current home in southern Louisiana. Summer highs in July and August are averaging 91, but lows average in the 50s. So while there is a peak of heat in the mid day hours, the night's cooling keeps much of the day pleasant. In the dead winter month of January, the high averages 37, and lows average in the upper teens. So there are a couple of cold months, then many mild months, and a summer that is warm enough for outdoor water park fun, but not unbearable for days on end.
But there's the real life issue of leaving family now. Grouchy's whole family lives within 40 minutes of our current home in Louisiana. They are amazing, loving, and some of the best friends I have ever had. It is very hard to tell them we are planning to leave. It is hard for many of them. We feel a terribly heavy sense of sadness at leaving them. That said......
The heat is an increasing problem for Addie and Garrett. We noticed Addie struggling with the heat beginning about 4 years ago. Each year since then, she has had more trouble with the heat. Addie LOVES being outside, riding her horse, and just enjoying the freedom of being out in the wide open. However, when she goes outside in temperatures over about 75, she wilts. It is a visible wilting, no kidding. She already cannot walk very long distances as it is, and the head makes that tons worse. It has been explained to us that mito kids often do not sweat (we are just now noticing that she doesn't) and cannot regulate their temperatures well - disautonomia. Some have trouble with cold, some with hot, some with both. In the heat, their energy is rapidly depleted as so much energy is used to keep the body remain at 98.6. But when it is hotter, they will even run a fever as the heat gets to them and they cannot naturally sweat and cool. Addie and Garrett seem to be okay with cold for now, but hot is torture. Just this summer Garrett has been able to vocalize that he is hot. He will go outside with us for a few minutes and then get very aggravated and start saying, "I hot. I tired. I go inside!" He will get some milk or water, then head back out...each time the outdoor sessions getting shorter and shorter. Addie will do her best to go with us out to the barn to get the horses and ride, but by the time she makes the 100 yeard walk to the pasture to get her halter for her horse, Lucy, she is wilted. She will usually slip back inside without telling us. We will go on getting our horses ready, then go find her. She will be inside on her bed reading a book. She will almost always look defeated. When we ask how she is and apologize for not seeing her come inside, she will almost always try to blow it off and just let us know it was to hot and that she is enjoying her book.
However, a few weeks ago, one of her friends was over for a riding lesson I was teaching, and Addie came out so she could ride during the lesson with her friend, Laura. I knew Addie had gotten dressed and was headed out to ride, but then I had to come back inside to get into my jeans and boots. It was so hot I was waiting until the last moment before I changed our of shorts. When I came inside, I sat on my bed to pull on my boots, and Addie came to me crying and very, very sad. She asked me to please not sell Lucy, her horse. We have never even suggested we would sell her, and we never push Addie to stay in the heat too much because we know this isn't something she can "get over" or "toughen up" for. But Addie went on to say that she felt bad that we bought her a nice horse and she doesn't seem to want to spend time with her. She told me that she wanted more than anything to be outside riding everyday, all day. She said she wanted to be outdoors all day and spend time taking care of all the horses and hang out in the barn. And then I began to sob, helplessly, along with her. Here's my baby girl, complete outdoorsy kid, and honestly thinks we might think she is a slacker!!!! I reassured her that Grouchy and I are doing all we can to get her and our household to a better climate.
And thus our trip here, our planned move over 2000 miles from family.....to try to do all we can for these kids, our kids, to prolong their enjoyment of their childhood. Living trapped in a body that cannot tolerate the things a kid should be able to enjoy is really unfair.
Tomorrow, we will meet our realtor, Maureen, in person for the first time. I found her while house hunting online a few months ago. She has horses and rides trails all over this area of Idaho. Near the Nampa Valley area, there are mountains where there are even herds of wild horses roaming!! We will meet her in Homedale, Idaho, tomorrow for a morning of touring 6-7 properties. There is one in particular that we are hoping will work out for us as it has a guest house as well as a pretty nice main house. We are looking at homes with land larger than 10 acres so we have room for the horses, 4-H livestock projects, room to ride and make a running/walking path, and maybe even till a little soil and plant some hay or crops.
While we have always dreamed of having more land than the three acres we have now, and we have thought it would be cool to live in the western USA, the children's health issues and heat intolerance put us over the edge with our decision making.
This is a fun trip, but there is always the undertone of making a huge decision and making sure we make the best one we can......simplify, make life more comfortable for the children, and maintain our family relationships with our families in LA and AL.
Addie and Ainslee went to a water and amusement park with my mom and a dear friend in Alabama. The girls had a blast!! Garrett hung out with my father, Pop, all day.
Grouchy and I enjoyed two long walks today..one this morning and one a few minutes ago after dinner at a yummy Mexican place. Time for sleep..yay!! Had noisy neighbors working out above us at both midnight and about 6 am this morning!! Hopefully they have checked out!!!
But there's the real life issue of leaving family now. Grouchy's whole family lives within 40 minutes of our current home in Louisiana. They are amazing, loving, and some of the best friends I have ever had. It is very hard to tell them we are planning to leave. It is hard for many of them. We feel a terribly heavy sense of sadness at leaving them. That said......
The heat is an increasing problem for Addie and Garrett. We noticed Addie struggling with the heat beginning about 4 years ago. Each year since then, she has had more trouble with the heat. Addie LOVES being outside, riding her horse, and just enjoying the freedom of being out in the wide open. However, when she goes outside in temperatures over about 75, she wilts. It is a visible wilting, no kidding. She already cannot walk very long distances as it is, and the head makes that tons worse. It has been explained to us that mito kids often do not sweat (we are just now noticing that she doesn't) and cannot regulate their temperatures well - disautonomia. Some have trouble with cold, some with hot, some with both. In the heat, their energy is rapidly depleted as so much energy is used to keep the body remain at 98.6. But when it is hotter, they will even run a fever as the heat gets to them and they cannot naturally sweat and cool. Addie and Garrett seem to be okay with cold for now, but hot is torture. Just this summer Garrett has been able to vocalize that he is hot. He will go outside with us for a few minutes and then get very aggravated and start saying, "I hot. I tired. I go inside!" He will get some milk or water, then head back out...each time the outdoor sessions getting shorter and shorter. Addie will do her best to go with us out to the barn to get the horses and ride, but by the time she makes the 100 yeard walk to the pasture to get her halter for her horse, Lucy, she is wilted. She will usually slip back inside without telling us. We will go on getting our horses ready, then go find her. She will be inside on her bed reading a book. She will almost always look defeated. When we ask how she is and apologize for not seeing her come inside, she will almost always try to blow it off and just let us know it was to hot and that she is enjoying her book.
However, a few weeks ago, one of her friends was over for a riding lesson I was teaching, and Addie came out so she could ride during the lesson with her friend, Laura. I knew Addie had gotten dressed and was headed out to ride, but then I had to come back inside to get into my jeans and boots. It was so hot I was waiting until the last moment before I changed our of shorts. When I came inside, I sat on my bed to pull on my boots, and Addie came to me crying and very, very sad. She asked me to please not sell Lucy, her horse. We have never even suggested we would sell her, and we never push Addie to stay in the heat too much because we know this isn't something she can "get over" or "toughen up" for. But Addie went on to say that she felt bad that we bought her a nice horse and she doesn't seem to want to spend time with her. She told me that she wanted more than anything to be outside riding everyday, all day. She said she wanted to be outdoors all day and spend time taking care of all the horses and hang out in the barn. And then I began to sob, helplessly, along with her. Here's my baby girl, complete outdoorsy kid, and honestly thinks we might think she is a slacker!!!! I reassured her that Grouchy and I are doing all we can to get her and our household to a better climate.
And thus our trip here, our planned move over 2000 miles from family.....to try to do all we can for these kids, our kids, to prolong their enjoyment of their childhood. Living trapped in a body that cannot tolerate the things a kid should be able to enjoy is really unfair.
Tomorrow, we will meet our realtor, Maureen, in person for the first time. I found her while house hunting online a few months ago. She has horses and rides trails all over this area of Idaho. Near the Nampa Valley area, there are mountains where there are even herds of wild horses roaming!! We will meet her in Homedale, Idaho, tomorrow for a morning of touring 6-7 properties. There is one in particular that we are hoping will work out for us as it has a guest house as well as a pretty nice main house. We are looking at homes with land larger than 10 acres so we have room for the horses, 4-H livestock projects, room to ride and make a running/walking path, and maybe even till a little soil and plant some hay or crops.
While we have always dreamed of having more land than the three acres we have now, and we have thought it would be cool to live in the western USA, the children's health issues and heat intolerance put us over the edge with our decision making.
This is a fun trip, but there is always the undertone of making a huge decision and making sure we make the best one we can......simplify, make life more comfortable for the children, and maintain our family relationships with our families in LA and AL.
Addie and Ainslee went to a water and amusement park with my mom and a dear friend in Alabama. The girls had a blast!! Garrett hung out with my father, Pop, all day.
Grouchy and I enjoyed two long walks today..one this morning and one a few minutes ago after dinner at a yummy Mexican place. Time for sleep..yay!! Had noisy neighbors working out above us at both midnight and about 6 am this morning!! Hopefully they have checked out!!!
Saturday, June 12, 2010
Open the window.
It's official. Garrett has Mitochondrial Disease. I have been blogging on another host site www.johngarrettevans.weebly.com for a couple of years, and then my dear friend Heidi (Hi Heidi and Jack.....see, I was listening!!) mentioned that it would be better if I could blog on a host to which people could subscribe, thus follow more easily. So here it is!!
I am out of words tonight, still numb, horrified and just plain tired from the past week's appointment for Garrett's muscle biopsy follow-up, coupled with last weekend's retirement bask for my best friend and dear hubby who just completed 20 years service in the United States military flying fighter jets. Yes, his call sign is Grouch, and I prefer a more affectionate name: Grouchy. If you wish to read our childrens' medical histories and history up to this point, please refer to the link above.
Grouchy and I are in Idaho for the next four days to roll our wagons onto a homestead....yes, just like Little House On the Prairie!!! We have dreamed this dream of moving West and having land for years, and now with the added push by Garrett and Addie's doctors for us to seek a cooler climate than the one in southern Louisiana which we now call home, this seems to be the next logical step. We have a great place selected, but the timing might not work. Our house is under a contingency contract, and the house out here is dropping in price, but that could hurt us as someone else might notice and buy it!!
Tomorrow we will go to a little church in the small town near the house, then cruise by the seven propertys we will be seeing with our realtor Monday and Tuesday. We are praying for discernment.....is this the right place, time, and arrangement? We are listening. The weather certainly is nice, I will give Idaho that!!!
As for Mito, I will have to save that very, very, very long conversation for another night, preferably when Garrett hasn't slept between Grouchy and me the previous night in a too-small queen size bed at my parents' home. Our luggage didn't make it, so goodnight without brushed teeth or a shower......CL
I am out of words tonight, still numb, horrified and just plain tired from the past week's appointment for Garrett's muscle biopsy follow-up, coupled with last weekend's retirement bask for my best friend and dear hubby who just completed 20 years service in the United States military flying fighter jets. Yes, his call sign is Grouch, and I prefer a more affectionate name: Grouchy. If you wish to read our childrens' medical histories and history up to this point, please refer to the link above.
Grouchy and I are in Idaho for the next four days to roll our wagons onto a homestead....yes, just like Little House On the Prairie!!! We have dreamed this dream of moving West and having land for years, and now with the added push by Garrett and Addie's doctors for us to seek a cooler climate than the one in southern Louisiana which we now call home, this seems to be the next logical step. We have a great place selected, but the timing might not work. Our house is under a contingency contract, and the house out here is dropping in price, but that could hurt us as someone else might notice and buy it!!
Tomorrow we will go to a little church in the small town near the house, then cruise by the seven propertys we will be seeing with our realtor Monday and Tuesday. We are praying for discernment.....is this the right place, time, and arrangement? We are listening. The weather certainly is nice, I will give Idaho that!!!
As for Mito, I will have to save that very, very, very long conversation for another night, preferably when Garrett hasn't slept between Grouchy and me the previous night in a too-small queen size bed at my parents' home. Our luggage didn't make it, so goodnight without brushed teeth or a shower......CL
Subscribe to:
Posts (Atom)