Clara-Leigh
Our son Garrett has a mitochondrial dna depletion syndrome, exact gene(s) unidentified. Our oldest child, Addie, probably has it as well. That leaves our gorgeous ball of energy, the middle child, Ainslee, appearing to be untouched by this disease. Follow along and peep through the window at our victories, struggles and lessons learned living with mito.
Monday, August 29, 2011
View From My Office
Clara-Leigh
Wednesday, August 17, 2011
My Sweet, Sweet Addie and Her Broken Heart.....and Mine!!
Godspeed,
Tuesday, August 16, 2011
My NERVES!!!!!!
Grouchy started a custom harvesting business back in Louisiana recently. He has two combines that can harvest wheat and soybeans. He is a farmer at heart, and I am a closet farmer as well. Well, I prefer the rancher title, but with only two cows....... I digress. Anyhow, Grouchy started rolling through fields last week harvesting soybeans for a number of farmers near his parents' home in White Castle, LA. Addie, Ainslee and I had planned to go visit family and friends there while Grouchy was there working, and then Grouchy informed me that I will be trained by our great friend David for two days, then turned loose to run a combine for several days. Keep in mind that our dream has been to have a farm or ranch and to work together. So now it happens and I am really getting nervous. First, we are a custom business, so we cut other people's crops. I really do not want to let anyone down!! Second, I know how much these machines cost and how sensitive they can be, and geez, can't I get a month of training??? Unpaid???? I have read enough of the manual to know where the two fire extinguishers are located. However, I have no idea how to turn the combine on and get it hot enough to start a fire........
My folks will stay in Idaho with Garrett, so Grouchy's mom will have time with just Addie and Ainslee, perhaps tons of time since both of their nutty parents will be on huge machines getting crops out of fields!!!
All I can do is pray, listen and learn, and hope I don't have to use a fire extinguisher!!!!!
Today was spent getting feed restocked for all our critters, cleaning the house, moving irrigation pipes to get the pasture and the alfalfa field watered, and spraying weed killer so my parents don't have so much to do and I come home to green where I want it and brown everywhere else...ha!!!
Godspeed, and pray the combine and the beans and I get along!!
Clara-Leigh
Sunday, August 14, 2011
She RIdes Again!!!
Friday, November 13, 2009, Addie took a tumble off of her horse that resulted in a nasty fractured humerous bone in her right arm. Basically, the head of the bone that meets the shoulder joint sheared off and had to be operated on. It was a very painful ordeal for Addie. As soon as her second surgery had the three pins removed and she has waited the 12 weeks for recovery, she hopped back on her mare and rode. The next thing we knew, it was hot, long summer in Louisiana and she didn't feel like battling the heat to ride. Her friend Laura continued to take lessons on Lucy and bonded with the horse while Addie wasn't able to ride. Then we moved, got busy building fences and entertaining guests here. Next it was a pretty hard winter here in Idaho, so very little riding. Finally spring arrived and we sold Lucy due to just not being a good fit for our kiddos or our horse program of no more estrogen....GELDINGS ONLY (that's a neutralized or "fixed" male horse). We got another horse, a nice, grey gelding that Addie named Prince. He ended up being a bit more horse than I thought, so I have been trying to ride him more and see if he can stay around or not. Meanwhile, throughout the past almost two years since her accident, Addie has not really been excited about riding. She was scared and told us she wanted to have a horse and care for a horse and even show her horse, but not ride. I was very honest with her in telling her a horse was way too expensive in the upkeep department to just have to lead around and brush. A goat maybe??? So we agreed to share Prince while I decided if we could keep him around.
I have asked Addie if she wanted to ride several times with very little pressure. I didn't want to guilt her or force her into riding, so I stayed off of her case and let things settle. Then two weeks ago at the fair where the girls took horses and Ainslee showed in the bareback class, she told me she wanted to start riding in the nice, deep sand of our round pen at our ranchette. I was so excited I wanted to jump up and down and cry (picture Miss America crowning here), but I supressed that and acted surprised and pleasantly pleased to hear this news.....HOLY CRAP, SHE WANTS TO RIDE.......HOW COOL IS THAT!?!?!?!? SO I told her that would be fine but that we really had to survive fair in 100 degrees first. She had Prince at the fair and her three year old gelding, Smokey. She showed them to all the adults and kiddos passing through the fair horse barn and took very nice care of her horses' needs including feeding and stall cleaning while we were there almost a week!!! So last week was the "week after fair" she spoke of, and I asked if she was ready one evening and the next thing I knew she had her boots and helmet on and was ready to ride Ernie, our old faithful horse. She rode several minutes and asked to TROT!! Again, almost got all spastic with excitement but had to act calm and unexcited!! SOOOOOO hard!! I was so proud of her, and after she dismounted, she said,"Ya know, Mom, I didn't feel scared once I got on and walked him a few steps. The trotting was so much fun, and I want to ride again tomorrow!!! I think I was just needing all that time to get over my fear. I think the fear is gone now!!" I was getting tears in my eyes but held back the emotion and just agreed with her. SO the next day she wanted to ride again, but she let me know by coming out to the round pen in her jeans and boots while I was riding Prince. She asked to RIDE PRINCE this time!!! WOW!!!!! SO I put her saddle on him and she took off like a pro!! She walked and trotted and put him through his paces like she never had riding time off!! Ernie is like driving an old, big Lincoln Continental or Town Car. He is slow to respond and sort of large and stiff. Prince is like driving a Porche.....super-responsive and very sporty feeling. I think he has Addie's respect, but she had fun, and while Grouchy and I were talking when he called while she was riding, he reminded me to get her off of Prince before she wanted to quit. I married a really smart guy!! So I did that and she wants to ride again!!!!
Below is a video of the ride in Prince, hopefully!!!
Godspeed,
Clara-Leigh
What's With Me?
So what's up with me??? Well, I am back to noticing this negativity I am harboring towards Garrett. I LOVE HIM WITH ALL I HAVE!!! But when I get lots of time away from Garrett with just my two girls or the girls and Grouchy, I absolutely, fully enjoy life and feel so free, fun and confident. Then I come home to Garrett or wake up with his sweet noise in my world and I feel very short-fused and impatient. It's like I get comfortable in "normal normal," and then I get back to "our normal," and it doesn't fit my plan. It's selfishness, plain and simple, but it is real. It is just so easy to track down Ainslee when she goes exploring all over the fair. No tantrums, meltdowns, true issues. It was liberating and enjoyable to just take off walking somewhere and not have to account for heat, attitude, or time of day and meds for Garrett. I could work in our fundraiser homemade pie booth TWO two hour shifts and not be in a hurry or be distracted. I had wonderful time just being my girls' mom and talking to and meeting other parents and kiddos showing their livestock. And then the rodeo...wow!!! It was so much FUN!!!! But then home to reality. And somebody has to deal with Garrett while I am off enjoying life. And that really puts a damper on things. Uuuugggghhhh. It's the pendulum again.....swinging wildly from the highs to the lows......
And I was lying here typing instead of sleeping, with the news channel on, a commercial for the Muscular Dystrophy Association came on. It was a very nice, new ad. I was excited to see it because Telethon is coming up very soon....Labor Day weekend. And it hit me again. My son has this disease. It has come from a very touching campaign to raise money to help "those poor kiddos and adults with muscular dystrophy" to being our life and a monster that taunts me, taunts all of us in this house, daily.
On a very bright note, Cooper Knight's SOOOOO AMAZING grandmother contacted me today to follow-up on our desire to help with an air show north of Houston that is a fundraiser for Dr. K's clinic. Dr. K is our mito doctor and we adore her and appreciate her group's research and clinical missions. So I have lots of calls to make to see what type of cool aviation-related items we might be able to get to auction at the air show. I have to contact military friends to see about getting more military aircraft flown into the show and parked for people to get to see. I am so excited to be able to pitch in. Wish I could go to the air show!!! I hope we can build some long-term relationships with people who can help make this fundraiser grow!!!! I know Cooper is looking down on "his" air show with pride for what his family and so many people work toward...a CURE for mito!!!
Blessings to each of you. Please say a little prayer that Garrett continues to stay healthy and that he adjusts well as school starts for him August 22 and we begin a new year of homeschooling Addie and Ainslee.
Godspeed,
Clara-Leigh
Tuesday, August 9, 2011
Will I Be Okay?
Sunday, August 7, 2011
Happy Birthday Dad!!!
Tiny Ainslee Shows her Big Cow!
In preparation for fair, Ainslee had to complete and turn in her record book for her 4-H beef breeding project and be interviewed for about 10 minutes about her record book and the project. She had to have some photos in her record book. Well, she didn't HAVE TO, but with a kid this cute, how could we NOT put some in!! So here is 50 pound Ainslee showing 1000 pound Beth earlier this year in her first show. She will move into the fairground barn on Wednesday morning and show Thursday.
THANK YOU to those of you who have helped us get the heifers and take care of them and learn soooooo much!!!! Lori and Kelly, you gals have been such assets and wonderful friends!!! Mr. Sarceda, thank you for the GREAT deal on the hundreds of pounds of grain!!!! DiDi, Nina, Pop, Sarah, Lee, Rebecca, Louis, Sophia and local friends, thank you for letting Ainslee practice showing her heifers in front of the kind audiences!!! Ainslee hopes to grow a herd of cows and sell the steers so she can afford to buy one horse of every color!! That's so Ainslee!!
Wednesday, August 3, 2011
Big Horse, Little Cowgirl
Godspeed,
Monday, August 1, 2011
The Lion Sleeps Tonight
Today Garrett and I had to travel about 45 minutes from home to do another SIB-R evaluation for his Medicaid intake. It was really just me reading through and answering a bunch of questions about his personal skills, independence, behavior and so on. At first we walked into a little conference room and the lady administering the testing gave him some crayons and coloring pages to help keep him ocupied. Well, that never works. After a few minutes of Garrett scribbling and then asking to go, the kind lady opened her laptop and found some kids' music to keep him occupied while I talked through the SIB-R evaluation. And guess what song he clicks first.....yep, THE LION!! SO there I am laughing inside as I answer questions about my son's hurting himself and others and how we are concerned about his behaviors, and there is that silly song blaring from the computer. It was just one of those funny moments!!!
I have so much to blog about from this past week of the county fair where the girls exhibited their three horses. I even have photos!!! However, I am completely spent and need to get to sleep. We have one more fair next week, this time for Ainslee to show her two heifers Beth and Adelaide. Oh, and we entered the photography contest with some of our photos and Ainslee, Addie and I each won fifty cents!! Woooo-Hooooo!!!
Blessings to each of you who keep up with us, pray for us, and continue to fight the fight!!!
Godspeed,
Clara-Leigh