Saturday, December 31, 2011

Goodbye Tough Year! Bring On the Blessings!!!

2011 had so many blessings, mainly the wonderful people we have met, a new church family, a very healthy year for our kiddos, and the amazing blessing of Medicaid services for Garrett which has brought us even closer to the loving caregivers who help with him so much!!! And lets not forget those people who touch our lives by teaching and caring for Garrett. And of COURSE our time with family and friends was dreamy!! However, when I look back, I must admit that 2011 was the toughest year I have had. So many challenges, twisting turns of life....nothing truly horrifying or tragic in the "normal" sense of those terms, but it was honestly a bumpy year.

But I will not dwell on that!! Instead, I wish to bid farewell to 2011 and try to be thankful for the inspiration, endurance, patience and peace that has come from enduring the year. It is always the tough times that make us appreciate the better ones, the valleys to help us enjoy the peaks, and so on. I am glad to put it behind and look ahead ANTICIPATING God's blessings, riches and love. The slate is clean and for crying out loud, I have NEW PLANNER PAGES, so of course the world is a better place, HA!!!!

Garrett enjoyed having Grouchy's parents here this week!! Shoot, we all enjoyed them being here. It was his dad's first visit since we moved here, and we made the most of our time, I think. Grouchy had to be gone for part of their visit as he had to go work for a while. Garrett certainly enjoyed the love only grandparents can provide!

I have some Garrett funnies to share, but my eyes REALLY want me to go to sleep!! Addie and Ainslee want to stay up another 35 minutes to see in the first new year they have been able to stay awake for, but that time seems SOOOOO far away!!!

As for resolutions, I can only resolve to do my best.....my parents taught me that from day one, and it is always the best policy!

Godspeed,
Clara-Leigh

Monday, December 26, 2011

Caught a Cat On a Fishing Line

So looks like we may name Ainslee's new kitten "Catfish" thanks to today's adventure!! A couple of weeks ago we caught two wild kittens on our little ranch. They had teased us for a couple of weeks just letting us see the three of them scram back into our large stacks of hay bales,but we couldn't seem to catch them! One day while we were doing school in our room over our garage, we were at our desks facing a huge window that faces the mountains to the west and our alfalfa field, the girls started yelling, "MOM, the KITTENS!!!" And there was momma cat and her three kittens heading out on a hunting lesson. They were far enough from the stacks of hay that we felt we had time to go try to get them. We grabbed a couple of plastic storage box lids and got hats and boots on and RAN outside as quietly as possible. Momma cat deserted her babies real quickly, and the three babies ran down into this 6 foot deep and 15 foot wide empty irrigation canal. Of course the girls tagged me as the one to do the actual grabbing, but I had on my work gloves so felt fairly safe! One kitten shot off past us to the hay, but the other two went down into the big irrigation ditch. Can I interject here that I LOVE my kids!?!?!? SO I dove down the steep ditch bank and almost skit down on my chin! Some tumbleweeds were all caught up together in the ditch, and one at a time we cornered the two remaining kittens under tumbleweed tangles, and Addie and Ainslee would distract them and I would grab. They were both grey striped kittens, but one had a little white and orange on it. It was the calmer of the two. After losing one of our last kittens to a vanishing and another to an incident with the garage door (quite tragic for the kids since they found her...dead), I told the girls we would raise and tame these kittens to barn and stable life as to hopefully prolong their 9 lives better than the last pair of hay kittens. SO we fixed up a large wire dog crate with a small crate inside so they had a cave to sleep in. We made a little box, and the girls kept them fed and watered and brought them in sime each day to tame them. Then IT happened. Ainslee accidently left the wire crate door unlatched, and the kittens both escaped and were not wanting to be caught. I even tried for over an hour by myself yesterday, but the kittens are getting big and very quick!

We drove to Boise today to pick up Grouchy's parents who flew up from Louisiana for the week. We got home and went to take them over to the bunkhouse, and right away Ainslee took Grouchy's mom, DiDi, to see her kittens.....who were still loose in the barn. And a couple minutes after they went from the bunkhouse out into the barn, Ainslee comes in crying and saying something about a kitten and a hook. A WHAT???? The kitten had managed to get a fish hook attached to a line on a pole up through her top lip and the barb end coming out of one of her nostrils. OUCH!!!! DiDi was holding the line and waiting for us to bring a towel to catch the kitten as it was hissing and very scared. We grabbed it and cut the line and took it into the house. We then treated the injured area, hook and all, with betadine and then clipped the barb off with my Mito bracelet-making wire pliers, and it easily slid out. We then cleaned the hole and wrapped the kitten in a soft blanket of Ainslee's where it has spent most of the evening purring happily! SO thus the name possibility....a cat caught with a fishing pole....Teresa, you might be right!! CATFISH!!! Ainslee isn't buying it, but we will work on her!

So another first for our family. We caught a cat with a fishing pole!! Only us. Promise!!!

Many other weird things have happened to us lately, but I haven't had the time to report on those, but I will. Here's a sneak peak of some recent headlines:

"Clara-Leigh survives jury duty in a tiny wild west town 40 miles from home where "you better bring a sack lunch 'cause there isn't food in this town"

"Unmanned car rolls out of its parking space at WalMart and smashes a large dent into Clara-Leigh's car"

See, you just have to read these blogs because they can bring so much useless info and entertainment to your home!!!!

I should blog about Christmas, and will. It was a wonderful day. It was just the 5 of us in our Idaho home Christmas day, and while it was different and sad being away from our LA and AL families, there was something wonderfully calm and peaceful about just being here, going to the Christmas Eve candlelight service and Christmas Day service and keeping Garrett in his groove and calm....sort-of!!! The kiddos were way spoiled with too many cool gifts, we enjoyed reading the Christmas stories in the Bible, delivered some pies to our dear neighbors/friends, and then went to bed at a reasonable hour even!!!

I also want to blog about the year in review. It will probably be a long one.....not all cheery, but overall insightful and full of thankfulness, reflection, and a depth of love and growth I cannot claim during any other period of my life. I really should stop here and get sleep to recover from the past 4 nights of past-midnight work trying to get 2 iPads and an iTouch synced and loaded with lots of youtube videos and aps for my kiddos. Let's say I have learned A LOT in that time!! I have also learned to check under the tree FIRST when a gift is missing........at 2 a.m. Christmas morning, I found it.....wrapped.....under the tree......just like I had planned the day it came in the mail.......I NEED SLEEP!!!

Oh, and thanks to my parents for the electric mattress pad...oh my.....life was good..... now it is GREAT!!! It's the little creature comforts that make a big difference for me these days!!!

Looking forward to a wonderful week with Grouchy's parents!!!! And BEGGING God for some now so we can FINALLY ski!!!!! Also looking forward to many visitors in the coming months!!! Can't wait to see the Gusinde family in a couple of weeks and then Aunt Beth and Emma and Colton in late February!!!

Christ the Savior is BORN!!!!
Godspeed,
CL

Monday, December 19, 2011

Runaway Car, Police, and ME!!!!!

After Addie's dermatology appointment to get her stitches our from a suspicious mole being removed last week, it was on to meet Grouchy and Ainslee so I could give Addie to Grouchy and get Garrett for a PT evaluation and checkup for his AFOs. Both appointments went well. I kept Garrett with me so we could have some time together running some errands and pushing some shopping carts at WalMart (Garrett LOVES pushing any shopping carts!!!). We did very well in WalMart, getting some last minute gifts and gifts for a family we are honored to buy some gifts for this year. The checkout lines were slow and long, but my little Garrett did well. I was so proud of him. Once we paid for our items, we headed out into the parking lot to my GMC Yukon. But when I saw it, there was a small, red Chevrolet Aveo smack dab (that's a Southern term) next to it. I mean REALLY up against it, as in its right rear bumper corner was packed tightly against my Yukon's left side just behind the left rear tire. And there were people......a nice lady named Rebecca with her baby and 13 year old, a Wal Mart manager and a WalMart security guy taking pictures and video. I was stunned for a moment and realized I was totally confused about what was happening when I said it was my car and everyone said they had no idea where the driver of the other car was! WEIRD!!! I was filled-in by Rebecca. Apparently the car had just rolled backward from its parking space and crunched into mine.....WITHOUT A DRIVER!!!! And poor Rebecca and her daughter and baby watched the whole thing!! Luckily no one was smashed in the process. Seems the car was a manual transmission and the driver didn't leave it in gear and did not use the parking break! It was getting colder and Garrett wasn't happy about sitting around, but the manager told me I needed to call the police to get a report and wait for WalMart to page the (non)driver of the other car. He FINALLY came out, and it was really pretty funny. It was a new little red car with a GQ magazine in the seat, so I wasn't expecting the 70 year old little white-haired man!! He was so kind, and I could not be angry....there was no conspiracy here, just a freak circumstance really. The police showed up several more minutes later but didn't have the right form for us to use to exchange insurance, so more waiting began. Now Garrett is getting pretty raw. I knew he needed to get to a potty, but the potty in WalMart was closed and I wasn't about to have him whiz in the parking lot with 200 cameras and my very own police officer!! So we waited....I will get back to that whole potty topic later. About an hour and a half later, we were all laughing about it and making sure we were all in touch so we could get USAA, the insurance companies both of us in the accident use, could handle the case. I just have a huge dent, but no other damage. WEIRD!!

Now since we had spent so much time in the WalMart parking lot, we had exactly 8 minutes to drive a 5 minute drive, but in rush hour, to the pediatrician's office to pick up Garrett's Focalin prescription. He ran out Friday, but I thought we had one more month of paper script on file at the pharmacy, but I was SO WRONG, so I had to go get more scripts. Focalin is pretty tightly controlled....translated=PAIN, but wow you can tell when Garrett DOESN'T have it!! So I ran in to get it. I even got it filled there at the pharmacy in the same building....SHA BAM!! I am feelin' so efficient and powerful about this time. Until.......

Until I get into my car where I left Garrett so he wouldn't pick up too many more germs, only to realize he had thrown a toy into my large diet cherry limeade, causing a huge puddle of ice and red drink to flood the floorboard carpet and mats. Great. I began to sop it all up with the thousands of McDonalds napkins I hoard in my door pocket for times just like this. And again, I was feelin' pretty self sufficient and downright boy scout-ish when I was done cleaning, and then I remembered that Garrett had not gone potty in a LOOOOOOOOOOONG time now. SO I ran across the way to put the Sonic mess into the garbage can, then opened the rear door to get Garrett out so he could pee pee in the parking lot, and when I reached to unbuckle his lower buckle of his 5-point harness, I realize he and now my hands are SOAKING WET with urine. It's under the car seat, all in his pants, the lining of the seat, etc., and so I left him buckled and decided to just deal with it at home. And all the while, my sweet boy is saying, "Mom, you mad? You mad at me. I didn't mean to spill. I drop my toy and it spill. It not nice I did that? Mom, why you not mad?" And how on earth can I be mad at THAT?????

So let me go back a month or so. I got my first jury duty notice a couple months ago. I was really quite surprised and excited. I have never been called to jury duty, so I thought it might be a good adventure! I mean what mom of three young kiddos wouldn't love a day or ten of sitting in a peaceful room, perhaps reading a new book to pass the time........I sent the reply in and let the court know I had no "blackout dates." Last week I got a notice I was to report on Wednesday, Dec. 21 in the courthouse of our county. We live in a huge county with a county seat waaaaaay far from where we live and in a tiny little town. I was suppose to call Tuesday night, tomorrow night, and press a number of a certain extension to hear if they still needed me on jury duty or not. This had happened once before last month, but Grouchy had left the letter in his truck by accident, and I didn't know I was summoned until the evening after I had to be there....OOPS!!! Later, I called to apologize and learned that if I had called to check, they would not have needed me. WHEW!!! So as far as I know, I need to call tomorrow night to see if they need me Wednesday or not.

I have been thinking about going back to school......that's another long post......but in order to go beyond my bachelors degree, I need to take some courses over that I never understood, mainly chemistry. I have been accepted to a local junior college where I had also made an appointment to see a counselor tomorrow so I could get finished registering and enrolling in a chemistry course that starts in a few weeks. I was so excited to start back one class at night per quarter to wake my brain back up!!! I need it!!!! And I want to truly understand and grasp all things chemistry. But then my phone rang as soon as I was heading out of the pediatrician's parking lot. It was this lady from the court telling me to be in the tiny town in the tiny courthouse at 8:30 in the morning, a day early, and plan to be there all day Tues and Wed!!! Oh and, "Bring your lunch because there isn't much to eat around here!" So at the very last moment I need to reschedule my appointment with the counselor at the college, call someone to get Garrett off the bus since my Grouchy has to have the girls at the gym for dance and gymnastics when Garrett gets home, have someone else at the house to meet the new PCS girl for her first day AND hit the road by 7:30 for the almost hour drive to this old wild west town that doesn't have food for jury duty. WHEW!!!

It was just one of those afternoons!! It was plain nuts!!! But it worked. The car seat components have been washed, Yukon seats and floors cleaned, meds all ready for tomorrow for Garrett, caregiver getting Garrett off the bus (THANK YOU KALI!!!), caregiver staying to show new PCS gal around, Shelby lined up to take over with her developmental therapy once PCS gal leaves and Shelby gets out of school, a bag packed with books, magazines and bracelet-making supplies........oh, and my new Franklin-Covery planner pages ready to be prepared for the new year...MY FAVORITE!!!......and even some snacks in the car for the day in the wild west town in the courthouse!!!!

Glad most of the Christmas shopping is done!!!!!

Tonight so many children and families are in my prayers. And I reflect on the blessing I have in being able to take my Garrett on outings, to the doctor, therapy, having the opportunity to change his urine-soaked pants, feel him kick the back of my seat in the car, scream violently after he is sick of being in the car. That means I still have him, and that is a huge blessing. Tonight Ainslee was frustrated with Garrett, even after not being with him most of the day, and she asked, "Mom, why did God make Garrett this way, and why did he put Garrett into our family?" I froze, as I had to ponder because I ask this question very often. All I could assure her of is that for reasons we cannot grasp on earth, God believes in us and trusts us because we are capable in His plan.

Blessings to all as we near the Savior's birth!!!

Godspeed,
Clara-Leigh

Thursday, December 15, 2011

The Waves

I grew up in northern Alabama on a mountain in my own paradise of forests and trees and vines to cut at the ground and then use for swings.......and animals and at least one trip to the beach each year. Most of you have been to a beach of some sort, but unless you have been to the sugar-white, dreamy beaches of Alabama or the Florida panhandle, you cannot fully imagine the beauty of the beaches I was so blessed to grow up on. It was truly dreamy. Thank you, Mom and Dad!!! And I remember very clearly the sounds of the ocean in the Gulf of Mexico along the silky, white sand. I can remember hearing it as I swam, built sand castles, chased sand crabs, or as I became a teen, lying out until I was crispy "getting a tan." The sound is calming, rhythmic, soothing, but not truly consistent. It had its own rhythm, but sometimes it misses a beat. So there might be a minute or so of similar sized waves washing ashore, but then sometimes there are these pauses where the rhythm is still there, but barely audible.....like skipping a few beats and then another wave coming ashore after a few that didn't really come on shore at all. This is the best way to share the emotions I am feeling tonight.

Yesterday I was so excited about the Make-A-Wish wish being approved for Garrett, and I still am very, very happy. I am thinking I may be happier for Addie and Ainslee than I am for Garrett even. I feel like they deal with so much. And I have shared before, but I will state again that I am not the parent I was before Garrett. I am not as energetic and fresh and motivated. Yes, I know I am getting older each year, but it's not that. It is just the toll and change in focus and need to just survive the next thing with Garrett that have taken so much of me from Addie and Ainslee.

But the waves. That is how I sense the emotions. There are days where the waves crash all day, albeit gently, but on time, never missing a beat, and I allow myself to settle into a groove of knowing things are "off" in our household, but that we are okay and I can handle it. But then there are days like today when even just 5 minutes after Garrett getting off the bus at noon, I am feeling anxiety as I hear his weird screams, watch him struggle with his emotions, fill his diaper from past days of constipation, and go from thing to thing to thing without meaningfully doing anything focused. I spoke with a very dear friend today, Kim. She moved from Louisiana to Texas about the same time we moved from Louisiana to Idaho. We are close and our kiddos are close. She had not talked to Garrett in many months, but then he got on the phone with her and had a cute little chat. She was blown away by his verbal skills and how much he is communicating. I beamed, I BEAMED, and I was so excited to hear how she could see so much progress!! In the back of my mind I am guarded as I see every few minutes how not normal he is, but I did bask in the progress!!! The Grouchy stayed home with Garrett while I took the girls to their respective dance and gymnastics. I wasn't 5 minutes from home and he called to share his frustration with Garrett. Garrett had asked for a bowl of Raisin Bran just as he does most evenings before dinnertime, and Grouchy made a bowl for him with milk and all and took it to the table. Keep in mind Garrett can clear his plates on his own by taking them to the sink, can drink from a cup sometimes, etc. Grouchy puts the bowl at Garrett's place at our table and turns around and walks 20 feet to the Garage to put something in his truck. He walks in to Garrett standing by the table with the entire bowl of Raisin Bran poured out on the table. Grouch was very frustrated and I was feeling for him........but not because he had to clean up the huge mess, but because Garrett does this when I am with him at least three times per week!!!!! I have just gotten to a point where it just hurts now. It doesn't make me mad anymore. I don't get frustrated. I just take a breath, feel like I am shrinking, and start cleaning. And do you want to know what Garrett has to say when we ask why he does it. He says, "I don't know. I sorry." WHAT!?!?!?!?!?!?!?!? And then lately he got into my car and wrote on the display panel glass with a pen, put another dent in Addie and Ainslee's room, lost 3 Nintendo DS games, broke our new Apple desktop computer by putting multiple "things" into the CD drive, broke the kitchen drawer he stood in......from the PRICELESS post a few posts ago, lost the DVD player remote for our main television, ripped his Nintendo DS Nerf cover to shreds, has trashed 3 shirts by chewing on the sleeves until the fabric is completely ruined, AND has started pillaging my car's interior by unpacking everything in the console, seat pockets, etc, and I am back to having to lock my car and hide the key again. We are about to have to drill holes in our nice computer armoire so we can put a chain on it with a lock so he cannot get to the Mac desktop computer.

So is Garrett making progress? YES!!! He knows most of the letters of the alphabet when he wants you to know he knows. He is counting to 20, knows his colors and shapes and chats like ME!!!! He is saying please and thank you more often and still telling many people that he loves them. And there is the stuff that makes the waves gently break on the sand and roll up onto the shore. But then times like today when it is oh so hard to just face the abnormal and off and hard when I can no longer hear the rhythm, feel the sand, or even hope for it to resume. It's the waves, the roller coaster, whatever you want to call it. But it is real, it is always just around the bend, and it makes all of the joys and progress sometimes not seem so exciting or even promising.

I remember the psychologist plainly saying, "I think Garrett will need assistance in living throughout his life. I do not think he will live independently." I was shocked, but not shocked that what she said is likely, but that she SAID IT!! And times like today when I cannot hear or see or feel the waves, it is painfully real and it all comes back as I realize that while Garrett is making some great forward progress, the things that are off are not allowing Garrett to fit in with the world and manage better at all sometimes. He is improving, but he is also aging, and as he moves forward over time, the bar moves up so much more month by month that passes him by. And that is where I find this sadness. It's not a panic really, but a sad reality. The Raising Bran is the case in point. When I see the mess on the table my heart sinks. I sink. It is so painful to see my son do things that are so way out there and then say he doesn't know why he does them. And I believe him!!! He doesn't know. And neither do I.

There is my rosy analogy and overview of the latest emotions. Thank you for listening!!! And if you are in the same shoes, feel free to share. I hope I enable someone else to be real, share their feelings, and take a load off!!!

On a very bright note, Addie has her very first dance recital Saturday, and I am so excited. And just a tiny bit of news...SHE TURNS 11 TOMORROW!!!! OH MY!!!!! Addie is so beautiful and sensitive and loving. Her heart is HUGE (hopefully not literally, but I haven't heard back from the cardiologist on her tests yet!!) but she is beginning to be challenged by those stinkin' hormones. She has been off the past few days, not feeling energetic at all, just seems to have the blues. I am hoping tomorrow's shopping trip with Ainslee and Grouchy and their trip to Build A Bear help her perk up some!

Godspeed,
CL

Wednesday, December 14, 2011

WE GOT THE CALL!!!!!!!!

Make-A-Wish called me today to let me know that Garrett has been approved for a wish!!!!!!!!

The process had started a couple of months ago, some paperwork got lost, but now it's all good to go!!!!

I cannot express my sincere joy and happiness!!!!!!

We have talked about a wish for Garrett because he isn't to a point developmentally where he would know what this all means, but when I talked to the coordinator who signed him up and called me to tell me the great news, Disney World seems to be a great fit, as I had hoped it would. But the employee also shared with me that the wish can be something the entire family will enjoy as my typical two kiddos have endured this struggle alongside their little bro and should enjoy it as well! So next step, two volunteers will set up an appointment to come see Garrett and talk to us in our home. After that, I am not really sure how it all goes, but right now I am just so excited that it doesn't really matter!!!! He he he!!! YIPEEEEE!!!!

Just had to share the great news!!!!!!!!!!!!!! We would LOVE to take the whole family to Disney, but I cannot imagine how long we would need to save for that.....then there's the whole pieve of where to stay where Garrett's needs are met and we are not having to subject him to long car rides to and from areas and lines and all.....and this might be the answer!! My parents would love to meet us there, and that would give us two more sets of hands to help us with the kiddos....we will have to see how it all works out!!

Oh, and Garrett sleeps with a big Mickey and a little Mickey every night, so I think he would like to go see the mouse!!!!


Godspeed,
Clara-Leigh

Saturday, December 10, 2011

Garrett's Healthy Heart, Fun Day With My Girls and Welcome Home to OH SH%$

First and foremost, WOOOOHOOOOOO!!!! Garrett got a clean bill of health on his little ticker!!! His heart is in great shape, so much that the pediatric cardiologist doesn't need to see him for TWO WHOLE YEARS!!!! Can I get an AMEN?????

Addie's office visit went well today, and she had an ECHO, and EKG and then got a Holter Monitor to wear for 24 hours just like Garrett did a couple of weeks ago. Dr. Walker will call with results next week on all her testing once she receives the monitor back. I was a little worried because the first tech who did the ECHO took FOREVER and then after I thought FOREVER, she left and another tech came in and they looked Addie over again FOREVER!!! And they pointed at the screen and whispered.........ggggrrrrr....And of course they wouldn't tell me anything good or bad.....

Garrett was in great hands with Andrea getting him off the bus at noon and then Shelby loving him for me once she was home from school. So I had a FABULOUS day with Addie and Ainslee!!! It started with ice skating at 9 am with a homeschool group some friends of ours are in. Next it was to lunch with our friends Janna and "Little Shelby." Big Shelby is the one who keeps Garrett for us so much. Then to Addie's cardio appointment where she had her testing and we got Garrett's results. Next it was to the MacLife store to take our new Mac desktop system that is broken because SOMEBODY (aka Garrett) shoved "a couple, at least" things into the CD drive, according to the technician. THANK THE LORD the nice guy who helped me in the store offered to fix for FREE!!! WOW!!!! Next we met up with our lunch friends for a fun dinner in a downtown Boise restaurant where the kids sat at a table inside the restaurant, but the table was in an actual trolley car!! Way cool!!! Then it was off to the botanical gardens for the festival of lights. We went last year and absolutely loved it. We had friends from Louisiana here for that last year, and I missed them sooooooo much as we walked through the winter wonderland of lights, but we were with some super-sweet new friends, so I was thankful!!!!

Then it was home where we ran into the OH SH%$. I got the cows and horses fed in 22 degrees just fine, herded Addie and Ainslee around to get ready for bed as it was getting late, and then I walked into Garrett's room where he was sleeping. I was planning to go pray by his bed and kiss one of those million dollar cheeks, but when I opened the door, the green cloud hit me in the face. And then I saw him stir. And then I realized he had a hand in the BACK of his diaper. And then I realized his hands were CAKED WITH POOP!!!! And it was dry and not coming off easily and was all down his legs, in his bed, on his blanket, his hair, HIS FACE. I woke him the rest of the way and gave him a bath, much to his sweet tired confusion. Had to clip fingernails down to the quick to get them cleaned. It was really yucky!!! And then I had to change his bed, wash his old dirty bed linens and then vacuum his poopy room and spray deoderizer all over the universe.

So a yuck ending to a great day, but the yuck cannot take away from the fun time I had seeing my two precious little girls enjoying friends and beautiful activities!!!

Prayers for all our mito friends tonight and anyone inpatient for any reason. It's a tough season for so many this time of the year.

Godspeed,
Clara-Leigh

Thursday, December 8, 2011

Hearing Test Partially Flunked......Again

Garrett was a big, brave boy for another afternoon of hearing screening. In a previous post I shared that he passed most of the tests just fine, but one he completely flunked, like no response from his ear! So he did a tad better with that one today but it was still not nearly normal. The audiologist was FABULOUS with him, and she got another round of telling date. Her synopsis is that he hears well right now, but the test he failed twice now shows he is having some hearing loss. She believes that since it is in the part of the ear that it is, the culprit is Mito and the lack of mito function, thus energy on the cellular leval. She just wants to re-test annually and have us come in sooner if we notice anything weird......I mean more weird than his usual weird!!

Addie sees the cardiologist and we get Garrett's 24 hour hears monitor results tomorrow.

In the morning we are joining the online public school homeschool group for an ice skating field trip. The girls are soooooo excited!!! My friend Andrea will get Garrett off the bus and her daughter Shelby will have him after she gets home from school. WHAT HUGE HELP!!!!! The girls and I will get some errands run getting ready for dance recital and Christmas shopping.

Our house is all decorated! This is the first year in many, many years I have gotten the decor out this early and started the Christmas music and truly enjoyed this preparation for the birth of the Christ Child!!! I don't know why. But it's great!!!

Merry Christmas!!!
Clara-Leigh

Wednesday, December 7, 2011

Medical Update and Great News!

First, the GREAT NEWS!!!
Actually there are two bits of really great news!
First, Shelby, who is 17 and in high school and a dear, sweet friend of ours, has taken over all of Garrett's in-home and community developmental therapy. Her mom was covering until Shelby turned 17, since the developmental therapists have to be 17 years old. Shelby is so amazing with Garrett, and he adores her. She works so hard to engage him in the therapy activities, and she is so creative and willing to try her own new ideas. I absolutely adore and love this gal!!!
Second, and Shelby would probably write a very excited contribution here about this topic:
GARRETT HAS BEEN GOING TO THE BATHROOM ON HIS OWN TO PEE!!!!!! Now some of you might not appreciate this, but trust me, it is HUGE!!!! We have been working with him since summer by taking him to the potty every hour, then every two hours and so on, and it took months for him to do that, and he was doing really well listening to us and usually cooperating by going potty when we asked. But just a few days ago he was upstairs in our home and he came lumbering down the stairs and broke into a trot as he passed through the living room and said, "Mom, I have to go to the potty!" I almost fell over but then relaxed as I realized he likely was just spitting out phrases he hears frequently. But then I had Ainslee spy on him and he DID go potty!!!! WOOOOOO----HOOOOOOOO!!!!!!!
Pooping on the potty isn't on the radar just yet, but I think it might be on the map at least!!!! THERE IS HOPE!!!!! He has gone to pee on his own 5-7 times, and even twice for Shelby. THANK YOU LORD!!!

And I realize I haven't mentioned much about medical things as far as Garrett goes. Friday Addie has a cardiology check-up, and we will also get the results of Garrett's 24 hour Holter monitor he wore a couple weeks ago. I expect it to be all good news. Addie had a little strange something show up on her ECHO in Louisiana over a year ago, but the doctor was not alarmed. He just wanted to see her annually. So we have a cardiologist here who I think I have raved about before. LOVE HER!!! Then tomorrow we go for a repeat of a portion of the hearing testing Garrett flunked to see if it is still the same result. The ENT was not worried, but the audiologist wanted to be cautious. As for Mito issues, we have decided to transfer Garrett to Dr. Saneto with Seattle Childrens as it is a quick one hour flight from Idaho as opposed to the one day of flying needed to get us to Houston to Dr. Koenig. I am bummed because I adore Dr. Koenig and her staff, and they have taken such great care of our boy. However, I need to be practical and logical here! Every time we have to go to Houston, which is about every 9 months, I have to jump through hoop after hoop with insurance since we are going out of our region for care. This should make things simpler. Meanwhile, we have to get a fasting blood draw done locally for Dr. Saneto's office, and we have the kit for the larger mito genome testing that we will have done if our insurance covers. Just have to wait and see! Garrett is around 42 pounds now and is a little string bean!! I cannot believe how he has gotten taller, and more handsome, if that is possible! His tummy is still not cooperating, but I know it could be much worse. He still trips and shuffles when he runs sometimes, but overall he can do what HE wants to do as far as play, so I am thrilled!!!
SO there is the very delayed update! Not too exciting, but it's what's up!!

Godspeed,
Clara-Leigh

Monday, December 5, 2011

One Horse in a Lifetime


They really do usually only come along once in a lifetime of a horseman. It's that magical, huge, powerful, flight-response prey animal who is kind enough to tolerate anything. This is Ernie. I have had him since he was 2, and he is 19 and has been so patient with Addie and Ainslee. Ainslee and Addie were sitting on their horses while they grazed the other evening and then THIS happened, this goofiness in the photo!!!

I grew up on two wonderful horses who taught me tons. I had other horses I was lucky enough to borrow or ride for other people, and there were a couple of heartbreaks along the way, but then Ernie came available to me......at a price I could not afford. One of my riding lessons kid's parents offered to co-sign a loan for me to buy him....without my parents knowing.....and it worked!!!! Don, if you are reading this, I still love you dearly for believing in my dreams and supporting me in making one of the biggest ones come true by having Ernie!!! My parents learned he was mine only after I had made the last payment......months early! I was always hauling horses back and forth to college at Auburn University, so they thought he was just another horse I was breaking or training or fitting, so I don't think there was any suspicion. It was quite a scandal that I was so excited about!!!! And that was about the worst secret I kept from my folks, and in the end they didn't seem upset.....maybe too shocked?!? But now my mom loves him and rides him when she is here, so I think in the end it all turned out well! Leave it to an only child with a dream!!

So here is our Ernie giving this little Ainslee a dream come true moment of her own!! There are not many horses who will tolerate this craziness, but I trust him and he does care for these kids beautifully! I just happened to get lucky enough to have a beautiful backdrop and my camera nearby!!

May your dreams come true, and may we all be thankful for God's very special four-legged creatures!!

Godspeed and Happy Trails,
Clara-Leigh

Tuesday, November 29, 2011

Priceless.....


You have all heard those ads where each item is given a price until the last item or experience which is always....PRICELESS?
Well, here is my version for today, Garrett style:

Flatscreen television shattered from being banged on....$1,200
Portable DVD player smashed from being thrown and hit...$200
Holes in house walls from slamming doors backward
s.....$250
Broken doors from above issue....$350
Replacement console for my car from being kicked and breaking radio and climate control buttons...$500
Mito cocktail supplements not covered by insurance....$250 per month
Respite care and babysitting since he turned 4...$THOUSANDS
Diapers for him for past 6 years and 3 months......$I cannot count that high
Finding him in his undies, eating Raisin Bran while standing in the kitchen drawer.......PRICELESS!!!

Usually, the things that we think are right are not so right and the things we think are wrong might not always be so wrong. So I will try to look at the huge amount that is IN my glass, not the bit that is OUT!!!
May the anticipation and excitement of the Christmas season and the birth of the Christ Child fill you with positive thoughts and ways to look for the priceless things today!!!

Godspeed,
Clara-Leigh

Thursday, November 24, 2011

Thankful!

Thankful. Thankful. THANKFUL!!!
I am just thankful!
I could write a list, but it would take all day.
I can pray, but I cannot even begin to say it all. (But I try!)
So I will just say that I have so much to be thankful for!!!
I just post a few pictures from the past few days of some of my very favorite people!!!
Oh, and the elves came!!! I will post that tomorrow!!
Love to all on this day to just be thankful!!!
Godspeed,
Clara-Leigh





Monday, November 21, 2011

I LOVE YOU!!!!





That's how Garrett wakes me each morning now.......tip-toeing in too early to wake Mommy, but how can I be mad when I hear the door open and feel him bump into my side of our bed and with the sweetest little raspy man-cub voice just say, "I love you."






Last week Garrett had a hearing exam, and ENT appointment to review the screening results and our first appointment with our new pediatric cardiologist and my new VARY FAVORITE doctor!!!






First, Garrett passed most of his hearing tests easily, but one he flunked, but the ENT wasn't worried at all. WHEW!!! What was most amazing is that he allowed the audiologist to stick all sorts of things in his ears and was pretty okay with it!! He would get mad or frustrated with the process and would just tell the sweet audiologist that he loved her!!!! We will return to her office December 5 to re-do the part he failed just to be sure.






Cardiology was simply amazing. This lady was the best ever as far as bedside manor with Garrett, and that's saying tons as we have been fortunate to have seen some of the most wonderful, passionate, kind doctors. She was even able to get his blood pressure, and NO ONE has EVER been able to do that while he is awake!!! She tapped into his love of music very quickly and sang a little song in correlation with inflating the cuff. He joined in by beating his chest like a drum along with her song!! CLEVER!!!!! He was so proud of himself!! Garrett had a PDA or a vessel left above his heart that was necessary in the womb but should have closed shortly after birth but did not. He had is closed with a metal coil placed during a heart catheter procedure at TX Children's when he was just under two years old. We are now being followed annually for that and just watching his heart since it is a muscle and his muscles are affected by Mito. The cardiologist had him do an ECHO and an EKG, and he did fantastic for both of those....soooo amazing how he is tolerating more now. It makes these appointments so much better!!!! Given Garrett's Mito, his PDA and a couple of episodes he had as a sleeping infant with a very high heart rate, the doctor ordered a Holter monitor to be put on him for 24 hours. He did great, so well in fact, that he didn't want to take it off!! He said it was what made him a real baby robot...thanks Andrea!! But we had to take it off at 2 pm the following day, and then today I dropped it off at the FedEx/sign shop/ice cream shop in our little town to be sent back to the office for retrieval of info. Addie will be going to see this same cardiologist on December 9 for some tests as a previous ECHO she had showed some slight abnormalities in function that are not alarming but should be followed annually. At that appointment, we will get the results of the the monitor Garrett wore.






As for the appointment I mentioned in my last post......it went well, but it was a business opportunity that looked great, but then upon further thought and time, Grouch and I realized that it was not that great of a deal. WHEW!! I love it when our intuition matches. It makes it seem like a more solid decision. However this still leaves us pondering what is next for our personal lives as far as business and/or work. Grouchy will have to go to work for 2 to 3 weeks sometime this week for his consulting job. We hate it when he has to go, but we are also very thankful in this economy that he has a job that is solid and that supplies for our family's needs and allows us to have time home together. Long term we dream of having our own business again and being under the same roof every night.....wherever that may be!!!






Addie and Ainslee are such amazing troopers!! Home school is going very well. Next week we will celebrate being 1/3 finished with the school year by having two scoops of ice cream at our favorite ice cream shop/sign shop/Fed-Ex store!! We usually have one little scoop each week we complete. SO the 1/3 mark is big!!! The girls are so committed to their work and make it more fun for me and for Grouchy when he helps us with school!! One of my favorite times is when he is working at home in our office/school/play room and is there with us and offering his help. The girls love Daddy's help!!






And that leads me to the daily realization that I am married to such an angel of a man. I am so incredibly blessed, and I know I am always taking him for granted!! So many things had to line up just right for us to even meet.......so it was not by chance. It was a Plan. I am praying for him more than ever and hoping I can do better showing my appreciation, love and support. I can never do enough to show him, but I commit to trying my best!!!!






Tomorrow will come soon. I will sign off as Garrett always does now....



I love you!!!



Clara-Leigh

Wednesday, November 9, 2011

Amazing.


Not 100% well, but 100% precious!!!!
Garrett is amazing.
I have been knocked of my feet by Garrett's recent progress!!!
You have probably read the blogs about Garrett's negative words being miraculously changed to "I love you." I have shared some of his increased patience in some situations, but really, he just keeps pleasantly surprising me each day!!! Today we had a neurology appointment and a pediatrician appointment. His neuro appointment was uneventful. We will follow-up with that doctor in a year. We scheduled a last minute pediatrician appointment since Garrett started with the green snot today. Seems he just has a virus. He certainly isn't 100%, but he is overall happy. He is just a little down. And as he told his Aunt Jennifer tonight, "I have lots of boogers in my nose!"
Tonight I was able to sit him on the bathroom counter and use the electric clippers to cut his hair AND clip his toenails, and he was fine....completely fine!!! In fact, he talked to me, asked questions, and told me it just didn't bother him anymore....WHAT!?!?!?!?!? YES!!!!!!!! It is like a cloud has been lifted in his little world and things are just looking up! He is more patient, more talkative in a logical way. He is more kind and considerate and tells everyone "I LOVE YOU!!!!" And I mean EVERYONE!!! It has been quite and exercise in psychology to see people's responses and reactions to him telling him he loves them. The pediatrician he saw today was a man, and very kind. The first time Garrett told him he loved him, the doctor just said, "Why thank you!" And then just at the end of our appointment, Garrett told him again, and the doctor's whole demeanor changed as if time stopped, and he said, "Well, Garrett, I love you too." It was such a neat moment. So real and sincere. Garrett told the lady in McDonalds at the drive-thru window he loved her. He told our veterinarian " I love you" in the grocery store last week. He tells us he loves us all day long!!! He will just say it anytime, when least expected! It is just the most wonderful thing to happen in my life lately.
And so I reflect because that is a large reason for my blog....to reflect and share and hopefully provoke some thoughts and ideas in your life as well. So why am I here? Why is Garrett here? And why does any of it matter????? I have shared my selfish heart many times here, and I believe God is at work on my selfish nature daily, especially through Garrett's life. I am honored and blessed with a marriage to my best friend and three angels of kids. I also still have both of my AMAZING parents living as well as Oscar's beautiful family in Louisiana. But Garrett......I have battled with this little soul of his and its purpose so many times. I couldn't get over why he had to be so miserable so much of the time between his tummy and his temper and sensory issues, delays, screaming and frustrations. I mean, why put anyone through that? Okay, God, you have some explaining to do. That was my mantra for many, many months. People outside our household, including well-meaning family and close friends would comment on how Garrett is such a witness of God's love and creation. And these were the same people who kept saying, "He looks so normal! How can anything be wrong with him??" And as you may have read here, those comments shook my soul and made me angry most of the time. They didn't live in our little home and "do this" day in and day out. But for me, this is my ministry, my mission experience in Calcutta, the Congo, etc. All of the things I thought I might be doing but am not, that's what this is!!!! Garrett is a huge blessing, and these recent changes in his language and temperment have helped me see the purpose of our souls more clearly. Garrett's sisters are also doing better with him and are so much more willing to entertain and play with him since he has sort of turned around. Yes, I know that this may be a phase, but I plan to enjoy every minute of it, just like I did when they were only minutes old....savor it and never forget it!!!

Meanwhile, the rest of life keeps going!! I know, sad, isn't it? But that means new opportunities!! Please pray for us tomorrow. We have a meeting in the morning that may lead to some great things in our life as a family. It may offer some sanity and relief for us in our family life and home life. Sorry to be so vague, but it's just not time to be too open just yet. But I can assure you that if things go as they appear to be going, you will be seeing a post soon about claiming God's blessings and knowing I need to spend more time on my knees in thanks and in pleas for more understanding and direction in life. You know how sometimes things are just sooooo clear????? Just a quick prayer, please!!!

Love and hugs to everyone, and please remember our mito friends inpatient tonight.

Godspeed,
Clara-Leigh

Tuesday, November 1, 2011

Trailer Trash

Before anyone gets offended, let me clarify. I am not talking about people living in pre-fabricated homes, campers, mobile home parks, etc. I am talking about the stereotypical trailer trash......the people who live in something that doesn't look safe, driving a car with a huge payment attached, several dogs tied under the trailer....shoot, the people like the movies portray in my home state of Alabama (except the reality show about the little blonde trying to find "mr. right" through smooching on all the :contestants" for weeks on television....that's trash too.!!) SO keep this image in mind....the stereotypical one...

Garrett gets off of the bus after a little bit of Halloween celebration at school, and his developmental therapist (better known as my dear, sweet, beautiful friend, Andrea), meets him at our house. Addie, Ainslee and I were out running some errands. When he comes into the house, Andrea immediately engages him in conversation and brain work as she always brilliantly does. She notices some purple Mardi Gras beads around his little neck and asks him where he got them. His response, "FROM THE TRAILER TRASH!!!!!!" I can imagine Andrea is on the floor laughing by now, so she sends me a text about it and of COURSE I have to call my dad, Pop, for a good shared laugh!!! I get home an hour or so later and Andrea is still grinning about it and shares that later as she kept trying to clarify what Garrett had said, she finally gets him to say it more clearly.....T-R-E-A-S-U-R-E C-H-E-S-T!!!!!!!

That's my boy, always keeping us laughing and on our toes!!!

Godspeed,
Clara-Leigh

Sunday, October 30, 2011

Small Victory = Huge Hope






Today Grouchy was out of town, we had church, a 4-H horse Halloween party (yes, took horses!!) and then reverse trick-or-treating with our church (consists of taking gift baskets to shut-ins and people near the church instead of going all over asking for candy) then home to feed animals then back to church to get the girls from the reverse trick-or-treating trip.






Schedule was so nuts today that I could not find a way to get Garrett to one of his sitters and have time to get horses loaded, family to church and then fed in time to do the hour drive to the 4-H party then back to the church again. So I canceled the sitter (Shelby, thank you for being on ready for me!! Love you!!!) and just took the whole crew.....including three horses and Garrett. We usually do not even attempt to take Garrett with us when we have the girls and horses since there are safety and sanity issues there.I was really dreading taking Garrett, but a part of me was excited to see if we could make this work. I left my horse on the trailer instead of riding and helping the leader since I had to be sure I was on the ground to keep my eyes on Garrett. That was actually great for my horse and Ainslee's horse Ernie since they seem to have separation issues!! Garrett sat on the toolbox of the truck and ate his picnic lunch with the girls and then stayed there for quite a while as I helped the girls get their horses saddled and all. Then there were lots and lots of trucks and trailers moving all about in close quarters, so he stayed in the back of the truck for a while so he would be safe. He finally got tired of being there, so I got him down. The home where we rode had a marvelous yard and some toys in the yard, so overall Garrett did pretty well. Some of the parents who were not helping with the horses and kiddos helped keep Garrett in view, and that was a huge help. I was a little frazzled worrying about keeping an eye on him as he is quiet and quick, but it really wasn't that bad!!!!






I feel like this is a little victory that gives me huge hope of a future where someday Garrett is a part of all of our family's activities. He did well in the truck since I let him have his Nintendo DSI. He pestered (Southern word!!) the girls some since they all three have to sit next to each other in our truck, but it wasn't overall bad. We even made it back to church on time!! Garrett and I took the horses home and did chores and then Shelby came to keep Garrett, get him bathed and put to bed, so I could go pick up Addie and Ainslee from church. Now I am in the bed watching television with my two little girls snuggled up next to me....just need Grouchy home!!!!






And yes, when Garrett would get frustrated or just at random times, he would tell me he loves me!! It is still happening, and the positive attention he is getting is really boosting his emotional bank account. It is just fabulous!!!



Please continue to pray for our friend Bert.









Godspeed,



Clara-Leigh

Friday, October 28, 2011

He Still Loves Me!!!


No, not Grouchy, although somehow through all of our mess we have been through, he does!! Or at least he says he does lots and lots. We both love that country song where the male singer uses the line, "overuse I love you!" We try!!


No, Garrett is the one still telling me he loves me!!! My last post was about how he has replaced so many of his negative, repetitive phrases with "I love you!" And he is still doing it going on two weeks!! He even does it more now! He tells me in the morning, at night, at bedtime, whenever I do anything he asks me to do, when he is frustrated, hurt, tired and just out of the blue!! And while I have been typing this, he has come by and hugged me twice and told me he loves me!!!!!!!

I am just in awe and on my knees multiple times thanking God for this amazing change in my son!! It is so beautiful, and just when I was asking God to change ME to make ME more patient, He generously rocks my world by "fixing" one of the most frustrating things Garrett does! It feels like a miracle!!!

On an aside, I have been praying for so many people, situations and things in my life as well as the life of our family. And some really neat things are beginning to be revealed to me. I cannot say anything much about any of those things right now for many reasons, but let's just say that they are in a few different areas of our lives and they could be very exciting, helpful and motivating!!!!!

Please pray for a very dear friend of mine, Bert, from our church in Louisiana. His brain tumor has returned, and his spirit and closeness to Christ are EYE-WATERING. He is such a mentor to me as a Christian and parent, and he presses on, running the race, knowing this is just the warm-up and continues to encourage all of us!!

Godspeed,
Clara-Leigh

Friday, October 21, 2011

Perhaps the biggest answered prayer yet!!



Hold onto your seats, especially if you personally know my Garrett!!!

A little background. I have shared before, but I will rehash some of the recent very frustrating verbal things coming from Garrett. He loves to tell me I am stupid and that he hates me. Then if I correct him, he says he is stupid and hates himself. He screams and screams and throws things when he doesn't get his way and is plain defiant sooooo often. Everything seems to be a fight. There's the Cliff's Notes version. Oh, and this doesn't help my patience or compassion. While I know lots of it is just brain poop spewing out and he may not even realize what he says, but it still hurts when I do all I can and our world revolves around him and he verbally assaults everyone.....yes, his caregivers, too.

I have prayed and prayed and prayed!!! I have prayed for more peace and patience and for God to help me not take the verbal assaults personally. And God HAS answered my prayer but in a much bigger way than I had ever even asked!!!

Last week, Garrett almost completely replaced his bad words to me with "I love you!!!"
I LOVE YOU!?!?!?!?!?!
SERIOUSLY????
YES, he did!!

So yesterday when he was mad in the car because his DVD player wasn't working and no one could fix it, he screamed and I corrected him and he started to cry and mumbled, "I love you, Mommy." And he doesn't say he is going to hit himself anymore much at all. He gets up in the morning and the first thing he tells me is that he loves me!! And when I give him all of his meds and he is feeling frustrated, he tells me he loves me!!! And when I reprimand him he tells me he loves me!!!! It is absolutely AMAZING, and it is transforming my heart and our home life!!! (and even if it doesn't really mean "I love you" when he says it, I will still take it and relish it and thank God for it daily!!)

THANK YOU GOD for this HUGE answered prayer!!!!!

Godspeed,
Clara-Leigh


Tuesday, October 18, 2011

Is It Coming Together?

No joke, this is an actual sign Grouchy took a photo of in Alaska on the north slope in the oil field camp......


Is it, maybe, coming together??



My brain, that is!



I think....well, there's a cool thing, me thinking much again!!
I have been thinking most of my awake life, but then lately my thinking has been very garbled, fragmented and just plain ADHD, especially this part year!!! Until today, I have felt very out of control of, well, everything. But I can change that. I have gotten back into a better prayer life, I am sure that this better communication my Maker is largely why I have found more clarity and purpose and feeling of control today......even though I realize I am NOT in control at all in the grand scheme!






So today I am multi-tasking while the girls are in music lessons. I am online at the music teacher's house while the girls are in lessons. See, multi-tasking. I am typically great at multi-tasking, but my priorities are off many times. Like, for example, I would rather be in town snatching my favorite bag of chips and a cola instead of using this time to blog, check email, and get my planning done.






So with this time being used more correctly, here is what I came up with! I need to set some goals. In a past life, I gave workshops and motivational speeches and even wrote curriculum for goal-setting in a corporate world. But I truly have fallen off the goal wagon, and I really need to get back onto the wagon for my own sanity and for my family's benefit.



So I will set some goals here in public. Feel free to ask me about these later. I need major accountability partners here!!!






I will start with these ten goals, and I plan to revisit them weekly:






1. I will walk, jog or do a combo of those for three miles around our "block" three times each week.






2. I will read my daily devotional.






3. I will be in bed, lights off, television off, book closed, by 10. I know, a serious stretch for me, but I have done it for several nights and I know it is best and I feel better!!






4. I will allow one soda per day, diet, then cut back next week to three per week....ooooo....could do soda only on day I workout. Now there's accountability!!!






5. I will read a book of my choice...one at a time....to its completion, before putting it down or beginning another.






6. I will smile at Garrett every time I see him!! Sounds weird, but if you know our relationship and the struggles, you know I am not usually smiling during our interactions!!






7. I will remain at peace in dealings with Addie and Ainslee, not letting myself let the rest of my surroundings or frustrations bleed into their lives.






8. I will be a better listener.............






9. I will eat two healthy meals per day. If I snack at all, that's another meal....I KNOW THIS!!!!






10. I will read these goals and monitor success weekly.






WHEW, glad that's over, but in reality, all of those goals will lead to more peace and patience and growth, and I need that. And my family needs that from me!!!!






On a side note, I might, just MIGHT get to go to the National FFA Convention this week in Indianapolis. I had the awesome opportunity to serve as a National FFA Officer in 1995-96 with 5 incredible young men....who are not so young anymore..ha!!! Anyhoo, for the first time in many moons, we are all planning to make it to convention for our 15 year officer team reunion!!! This is still a maybe for me because it depends on if Grouchy gets home from harvesting soybeans in Louisiana in time for me to fly out on Friday. I will sincerely enjoy the "me" time traveling and reading and just being quiet. I will also TOTALLY appreciate seeing my five dear friends and meeting their kiddos!! Between us there are 12 kids, I think, but I will go solo and get to meet most of their kiddos. I think I have only met two of them in person. Wow, I am so excited, and I cannot explain how amazing convention is if you have never been. It's thousands of youth on fire and motivated all around a love for all things agriculture. So in short I pray it works out, but I am so thrilled about our custom harvest business that not making it because of having beans to harvest won't make me fret too much!!!



Godspeed,



Clara-Leigh

Saturday, October 15, 2011

Getting Tired of These Yet??

WARNING!!!!!
More photos of cute puppies!!!
You may be getting tired of seeing Joy and Eli, but here goes anyway because
I figure it is better than going on and on about Garrett's disruptive behaviors and how I feel hopeless sometimes when it comes to that......... BUT I had these cute shots of the girls with the Puggies from school time yesterday, so I leave you with that instead!! Oh, and my friend Andrea kept Garrett last night so the girls and I could meet some friends and go to the drive-in movie!!! THAT was such a fun time. Thank you Andrea!!!!!!!

Addie with ELi all snuggled in for a nap!



And Ainslee with Joy (neither EVER slow down for a nap!!)

Godspeed,
Clara-Leigh

Friday, October 14, 2011

Just Photos

Addie working as the Pony Express


This morning......


Addie and Eli snuggling yesterday morrning


Grouchy's dad got Garrett this great fighter pilot jacket!
Addie and Ainslee sharing a moment on Big Red

Wednesday, October 12, 2011

A Prayer

Dear Heavenly Father,
Today I feel a strong need to fall to my knees to beg for mercy on children and adults suffering with Mitochondrial Disease. I pray you will give each of these people strength, peace and comfort. I pray for patience for caregivers, energy for parents, and peace for all involved in their care. I pray you will lead us in the way of educating people and securing funding that leads to treatments and cures for all types of Mitochondrial Disease. I ask your blessing upon those who live in a hospital room today, wondering that the day holds and how many days are left here for them. Please bless those who have buried loved ones due to this vicious disease. Pain is so real, so deep, and so overwhelming to these families. Lord, we need you. We need your help. We need hope. While you give us hope through your son's death on the cross and the sacrifice you made in sending Jesus to us, we need tangible hope now. Hope for a cure. Hope for release from suffering, and hope that this earthly life can mean we don't have to explain to our children why they don't feel good or explain to others why they look different or act differently than their peers.
Be with us each moment and in each breath, word, chore, expression, and tired continuation in this process. We need you.
Clara-Leigh

Monday, October 10, 2011

Worst Nightmare Ever

Two mornings ago I had a nightmare. I rarely have nightmares, and when I do, they are all disjointed and don't make a ton of sense, but this was the most real and terrifying one I have ever had.

In my nightmare, I was in a hotel room and my dad and Grouchy were there but had stepped out of the room through a sliding glass door onto a balcony. I noticed Garrett walk out in their direction, but then I realized I did not hear him or see him for a while. I got that "mommy intuition" that I should ask if my dad or Grouchy knew his whereabouts, so I asked them if they had seen him. Both guys seemed unconcerned and one of them said that he must be somewhere nearby. And it hit me...HOTEL POOL!!! Somehow I instantly arrived at the HUGE hotel pool, and there he was in the very middle of the pool lying on his side at the bottom of the pool in a white t-shirt and his navy blue swim trunks with white stripes on the side. While there were a few people on the pool deck, no one seemed to notice my baby boy at the bottom of the pool!!! I sprinted to the pool and dove in and swam as fast as I could. Interesting thing here is that usually with a dream this vivid and now this horrifying, I usually wake up about this time.....when it gets terribly real and bad. But that didn't happen, unfortunately. I snatched Garrett off of the bottom of the pool and was on the pool deck very quickly. His body was completely limp and very cool. He was not the 42 inches tall and 40 pounds in the dream. He looked it, but he didn't feel like it. I got out with him and began to try to pound him on the back to get him to cough up water. I have had CPR and all, but in the dream that was not all working right for some reason. I placed him in front of me in a standing pose with his back to me and tried to do the Heimleich Maneuver, but nothing happened. I know, rescue breaths and chest compressions, not Heimleich, but it's a dream...... I finally placed him on his back and began chest compressions and still nothing. I felt a couple of ribs snap and then knew I was doing the compressions hard enough...that's what they say when they teach it....that usually you break ribs.....but still nothing. Then I moved him to another place around the pool and there were two ladies sitting on the edge of the pool with their feet dangling into the pool, not noticing us, but talking about the little boy who drowned in the pool earlier that day. I kept pumping on my precious boy's chest and asked them what kid it was. They still didn't notice what I was doing but said that it was a little blonde boy in blue trunks and his mom tried to save him but he died. And then I realized that if he didn't make it and they knew that, then I was working hard to save him, but all in vain. The future was set and I could not change it. THEN I woke up. I looked at my watch and it was 5:00 a.m. Then I began to pray and tried to calm myself down as I wake in the moment I realized Garrett was dead. Within a minute, I heard the pidder-patter, bump-bump of his little feet coming towards our room across the hardwood floor. I got up to go sweep him up into my arms, and he had snuck over to his little portable DVD player and was starting a movie with the volume down very low. It was still dark, but the blue glow of the DVD player screen made his sweet face look so amazing. I was so thankful he was up way too early. I just wanted to touch him, kiss him, and know he was okay. I was so blessed to wake from this nightmare to hold my boy and realize it WAS just a dream......a really, really, really, really bad one.

So do dreams mean anything or not? I think they are our brains letting go of "stuff" and mixing up things in a state of relaxation and rest. But I do think our dreams can show hints of things we harbor or hide or stifle way down deep. I believe this dream spewed my fear of losing Garrett but the reality of the possibility that his future isn't super promising. It showed the out of control feelings I have so often. It exhibited the fear I have of not paying enough attention to my son for both his safety and his learning and future. But most of all was the helplessness, the out of control feelings.

Just tonight at a local arcade, laser tag, go cart, party place where we met a friend for her birthday, I had another mom talk to me about her son. He is three and nonverbal and nonsocial. I told her Garrett was also nonverbal at age three. I just listened after that, and she shared that she went to this play place every night and paid $3 ever night to let him unwind and play so he would sleep. She said he never stood still, was in therapies, had sensory problems.....sounds familiar, huh??? She said she was always exhausted and wanted to know why her son had to be like this. She asks God WHY often and feels helpless. Gosh could I identify. After she shared and I shared Garrett's delays, she thanked me because she felt encouraged to see how kind and social and verbal Garrett is now at age six. Interesting how we have encounters with others in our same situation, ahead or behind us. I think God is helping us all by making these connections.

Wow, not a cheery post, but that's the stuff of my mind tonight. We had a fun time at the arcade place, we bought new ropes for both of the girls for their Working Ranch Horse project, and we enjoyed some shopping (and new, granola, comfy shoes for me on sale!!!) at Sierra Trading Post in Meridian. Tomorrow Grouchy heads to Louisiana again to harvest a few hundred more acres of soybeans. I miss my combine, and I have to say I am jealous!!

Tomorrow, we have school in the morning, piano, guitar and violin lessons after that, then my sweet friend Andrea who does lots of Garrett's developmental therapy, will go with the kiddos and me to an indoor trampoline park to celebrate Ainslee's 9th birthday. Some dear homeschool friends will meet us there. Then to the airport to get Grouchy's truck since he has to fly out very, very early!! Next, it's off to get Addie and Ainslee some comfy winter shoes and then to Ainslee's gymnastics class. Andrea is rescuing me by taking Garrett back to our house so he doesn't have to wait around in the car for gymnastics to end. THANK YOU ANDREA!!!!

Tonight I put my head on my pillow and enter an hour or so of prayer. Most of it will be thankfulness, and then there is that reality of my shortcomings I need to get out, and then prayers for our family and so many others. Most of all, I pray we are getting it somewhat right in this life. It is short, and I don't want to waste any of it!!!!

Godspeed,
Clara-Leigh

Sunday, October 9, 2011

Modeling

Addie and Ainslee had a very busy day and night. Last night, their friend Shelby and her mom, my friend, Jana, came over with their horse, Moonshine, to have a sleepover in our guest house. Ainslee and Shelby are both celebrating birthdays within a week of one another, and we partied!! The girls rode before dark, then they did crafts and played a tag game they made up in the dark outdoors using glow bracelets. Then they all fell asleep on the living room floor of the guest house. This morning, we got up and fed the animals, did chores, and headed to our second Working Ranch Horse clinic. I will have to take photos at the next one and blog about just that. Words certainly cannot touch the amazing experience for the girls and the horses and the kind, expert volunteers who make sixty-something horses and sixty-something riders all come together, under the age of 18, and do magic!! So I will hold that topic for later! When we came home from the clinic, everyone was excited and kind of punch-drunk!! We had birthday cake and ice cream for Shelby and then worked to get our round pen panels put back into place after Grouchy took the round pen apart to make the sand spread out better. Shelby and Jana left, and we all got cleaned up and ready for a relaxing evening at home. Next thing I know, Addie says, "Mom!!!! Mom!!!! We need to have a puppy modeling night!!!" And then the girls disappear and all I hear is puppies playing and lots of giggling!! Addie and Ainslee tracked down the American Girl doll clothes and dressed up along with the puppies!!! Needless to say, everyone will rest well tonight!! Enjoy these fun moments!!!

Meet Joy, the Sunday School teacher! Oops, forgot to censor her below the skirt parts!!


And here are Joy and Ainslee ready to hit the town shopping!!



Addie is carrying Eli in style on their way out for a movie!!

And it has been a very long, exhausting day of modeling and wardrobe.....


Godspeed,
Clara-Leigh

Tuesday, October 4, 2011

My Little Hero

This is my little hero, Garrett. I love him!!!
And it appears he is just a tad handsome!!

Monday, October 3, 2011

Puppy Luv

In my last post, I mentioned that Addie's little dog, Camper, died just over a week ago. It was a terrible accident, and it happened with Grouchy at the wheel of his truck, and he and Addie have been so upset. Addie is seriously mourning the loss of her beloved dog, and Grouchy feels responsible and helpless and crushed for Addie. Then Addie is feeling bad for her daddy and trying to help console him. WHAT A SAD MESS!!! We knew Addie would want another puppy to raise and train, and she likes her personal pooch to be small, but we thought it would be a while before she would want one. As I watched her slip in and out of a depression of sorts every day, I finally asked her if she felt like looking for another pup, and through tears, she said that she would like very much to look now. One or two nights on Craigslist led us to a lady only 4-5 miles from our house (and there just aren't that many people in rural Idaho within that radius), had pups that were 8 weeks old and were 3/4 Pug and 1/4 terrier of some variety. So here they are!!!! Addie got the male who she named Eli. He is the traditional Pug tan color with a black head and face. Eli was Camper's animal shelter name, so she did this in Camper's memory. Ainslee asked so sweetly and with her birthday this week we caved and also got Eli's little sister who is black and named Joy. Last night they all slept well, and they are doing great with crate and potty training. You can see in this first photo that Eli jumped right into school today by sleeping on Addie's desk!!!! They are both so stinkin' precious and cute.....and I know, faces only a mother could possibly love. Cooler yet is that Grouchy is absolutely smitten with them both!!!
Oh, and meanwhile, last week we adopted a three year old male lab named Sonny from a man in Boise who traveled too much to keep him. It was a tearful exchange, and after a day and a half of nervous pacing and fetching, Sonny is now settled in......so settled in , in fact, that as my little girls doze in their bedroom tonight, he is asleep beside the bed lying on a HUGE soft blanket which has him propped against a beanbag. Truly rotten!!!! So the huge yellow lab is Sonny.
Whew, the animal kingdom is cranking up around here, but there are still many, many tears to be shed over our sweet Camper. I have a really amazing photo I took of Camper and Addie while he was on her desk during school his last day. I cannot post it yet because if my mom sees it, she will shoot me all the way from the hotel in South Dakota tonight!!


Meet Eli. He already loves doing school with Addie!!!



And here is cross-eyed, neurotic fetching maniac and very, very sweet 110 pound Sonny!



Yes, this is a girl pup. Her name is Joy, and like Ainslee, her mom, she is energetic and wild!!


And this is probably the most precious face I have seen on a dog!!! This is sweet little Eli, the very kind, calm and quite lazy pup God sent into Addie's world to help heal her broken heart. This little pup is just perfectly precious and already loves to curl up on Addie while she reads in her bed!!!

Godspeed from the Funny Farm!!
Clara-Leigh

Thursday, September 29, 2011

Still on the Roller Coaster But With Great Fellow Passengers!!

I just first want to say THANK YOU to all of the people in my life who pray, love, support and help us in any way. Seriously, we are so blessed to have each of you on our team, and we love you dearly!!

That said, I feel like updating some on Garrett's current medical and mental status. A few important appointments are coming up in the next weeks and days. Tomorrow, he sees a PA for an ear, nose and throat doctor. Once we see the PA, then we can see the doctor at a later time if needed. I wasn't loving this gate keeping concept at first, but I have decided to have an open mind and see how it goes with that one tomorrow before drawing conclusions. Then on October 11, he sees a pediatric cardiologist in Boise. It is just time for his annual heart checkup. Then soon we hope to schedule pulmonology. Garrett's pediatric GI nurse practitioner wants him to be re-evaluated for airway issues and reflux damage. She noted his hoarse, raspy voice right off. I always notice that when he talks his neck seems to strain and huge veins or arteries pop up on his neck. My guess is that he isn't using any muscles below his throat to talk, so he strains. She is worried he has continuing silent reflux. I am playing phone tag with the GI nurse practitioner's nurse as Garrett's clean out hasn't gone as planned at all. I just do not feel he actually cleaned out, and now on maintenance regimen, I don't see him having enough movements. Perplexing, and I have a gut feeling (no pun intended), that his GI tract is going in a bad direction. Meanwhile, he is just under 40 pounds as he has been for a few years and is 42 inches tall, so he is growing taller!!! We will see Dr. Koenig in Houston on January third. Behaviorally, he is talking great, coming up with some very witty, humorous things, and becoming quite the con artist!!! However, his frustration, tiredness and non-compliance issues are still very much present. As his mom, I feel I get the short end of the Garrett stick, but don't we all get that from our kiddos usually? I know they usually act better for anyone but mom, but seriously, does it have to be this bad???? It is like everything I try to do with him, especially at home, is destined to end in a threat, pop, raised voice..... For instance, just a few nights ago while my parents and Grouchy were still all home, we had a little birthday celebration for Ainslee, who turns nine next week. As my mom is taking photos, I squat down by Garrett and try to have my picture made with him. He smiled for a second, just long enough for my mom's camera to still keep delaying, then would NOT look at the camera or stop pulling away from me and acting like a toddler. And then it happened. I literally pushed him farther away as he tried to pull away. Unfortunately, I have been pushing him away mentally for a year or so. I just get so tired of the constant struggle. Running from me for meds, clothes, or just whenever I call to him, getting kicked while changing his diaper or clothes, having him run up to me and hit me or call me stupid. It's just plain aggravating and helpless feeling all in one. Many, many, many, many times he has seen the frustration and "giving up" on my face. I know he has. He will sometimes, after a stern verbal reprimand or threat look at me and say, "smile Mommy. Be happy." And then to feel myself, without even thinking, push him away. I give up. I figure, "What does it matter if I fake happiness and okay-ness with this mess? It doesn't ever change his behavior...." I get tired.....daily.....of the struggle. I did not shove him or hurt him, and maybe he didn't even notice, but my heart was cold and I wanted to just show him I was fine if he just went away from me that moment. And I meant it, perhaps more deeply than I even know. Of course I do not want my child off of this earth. But I do want a chance. I want a chance at a relationship with my boy. I want him to do more than bounce off of me when I get home with a quick huggish-type lean into me before ADHA-ing to the next two minute thing he trots off to do. I want him to want to sit by me at the table. I want him to want to be near me.....but he just doesn't want to. And maybe that is because I have pushed him away for so long. And then I try to leave to go anywhere and he acts like I am crushing him by leaving him.....REALLY!?!?!?!? I could go on all night. Heck, glad you guys don't charge by the hour!!!!SO the update is about Garrett, not me, but I felt I needed to get this pushing away stuff addressed.

He is good at school and church and sometimes for my dear friend Andrea who does his developmental therapy. He does try Andrea a lot, but she holds the little dude, very lovingly, to the fire of improvement and learning, and I love her for that.....and many other things, of course!!! I guess in the end, I am his mom, he is my child, and I have to find a place where I am okay with whatever our relationship or interaction is each day. I love him!!

Whew, didn't mean to go on like that!!!

On another front, we tragically lost Addie's sweet dog, Camper, last Friday. Grouchy was coming in our drive and turning a different way than usual as he planned to back up to our trailer to go get corn, and ran over Camper. I was helping a neighbor work cows and my dad called to tell me. Grouchy has been so terribly sad it happened, and Addie feels like she lost her baby!!! Camper was born at the animal shelter where my mom volunteers, and Addie was with her the second day of Camper's life and got to love on the whole litter of pups. Grouchy, Mom and I surprised Addie by my sweet mom driving 8 hours to bring Camper to her. Addie had no idea!! It was so fun!! Then Addie took this tiny pekingese mix pup through obedience school, and both Addie and Camper did SO WELL!!!! He has been a really cool little dog. He sat on her desk during school, loved to lay on Addie's bed for hours while Addie read, and was just plain cute and fun. I would post photos, but I will cry more if I see Camper's face again tonight!!!

On a good note, Oscar has been ready to get another lab-type dog since his boy, Remmi, died earlier in the summer. We saw a dog on Craigslist and went to meet the dog and his owner today. We ended up bring "Sonny" home, all 110 pounds of neurotic fetching machine, and he is such a sweetheart. His previous owner's lifestyle had changed, and he could not keep him with the traveling he was doing. He has screened many people and chose us to take his boy. Sonny is huge, sweet and very active. He LOVES to fetch over and over and over and over and over!!!! He is whining a lot tonight as he is adjusting to life away from his owner and a new place. He did stay close to our house today and our quiet little mysterious red heeler dog, Ginger, seemed to like him so much, so they played some, and that was fun!!! Addie says she really likes Sonny, but we know she wants another smallish dog as her own little companion. We all need to heal and let some time help with that after Camper's death. It is so amazing how these pets become such a part of our lives and how much we can love them......and how much loss hurts.

If you are not familiar with it yet, do a little search for a drug called EPI-743. It is the first true Mito drug out there, and trials are showing promising, extremely promising results for the select few using it. Please pray more Mito doc's hospitals can get approval and get the product in. Pray it will save even more lives and that patients hang on long enough to try it. And pray for those people "not within the estimated last 90 days of life," or "not sick enough" to get to try the drug YET. Science is catching up to Mito, and we need prayers, funds and awareness to make it all happen!!!

Again, thank you to each of you who board the Mito and life-in-general roller coaster with us daily, weekly or monthly!!!! We cannot do this without you!!!

Godspeed,
Clara-Leigh