Tractors, Ponies, and Mice......NICE!!!

So why do cats do this???? They PLAY with their food! Look at the mouse!! It is on its back, eyes open, "playing dead," for Ainslee's cat Diamond. This morning before I got up, Grouchy saw Diamond batting a mouse around, but the she let it run under the oven. So when I had finished cooking this morning, I pulled the drawer our from beneath the oven and within 5 minutes Diamond had crawled under and reclaimed her prize. She then took the mouse to the landing to the bonus room stairs, and THIS is what I saw!! Grouchy finally caught and killed the little devil, and now I have two more drawers in the kitchen that have to be disinfected as cute little mousey left some "droppings" for us......EVIL!!!!

Over the summer Grouchy bought two young horses, and both have just come home from 30 days of horse boot camp. The above photo is Grouchy riding Smokey, who will be four in the spring and is HUGE!!! This was Grouchy's first ride on Smokey, and he did great in 25 mile per hour wind and very cold weather. He has also ridden Smokey's half brother, Dusty, who Ainslee has claimed. Dusty will be 3 soon. The two horses have the same sire (baby-daddy).

And finally, LOOK AT GROUCHY'S SMILE!!!!!
That's the beautiful man God so generously placed in my life. I just love him! He and Garrett took a spin in our new tractor. Garrett was giving me a thumbs up, and Grouchy was so happy and proud!!!

Godspeed,

Clara-Leigh

1 or 20 ???

I always have the Mito Awareness Bracelet photo and tab just to the left here, but I have these beautiful new cards that my friend was kind enough to make for me, and with a ribbon to attach the bracelet, the total package is now ready!!

So for a minimum donation of $5 for each bracelet, I will gladly pay shipping to get them to you. Proceeds go to the United Mitochondrial Disease Foundation http://www.umdf.org/

Sales pitch: They SERIOUSLY look gorgeous in groups of 4-6 stacked!!! I'm just sayin'!!!

Godspeed,

Clara-Leigh

Mom, People Think I'm Stupid

"Mom, people think I'm stupid." Garrett tells me as I tuck him into bed tonight.

"No, Garrett, no one thinks you are stupid." I quickly reply.

And he insists, "Yes, they think I am stupid."

"NO THEY DON'T, Garrett. No one thinks you are stupid!"

"They don't?"

"No, Garrett, they don't."

Uuuuhhhhhhh........and I kissed him goodnight and wanted to crawl under his bed and cry and just stay by his precious side and protect him from any assault from any angle in any way. Let me face it, Dear Lord, that someday I am going to see someone make fun of him, and maybe even call him hurtful things, but gosh I have some preparing to do. I do not think anyone has said he is stupid....to his face....yet. But to hear him say these words tonight..... makes me wonder what's coming.

Many, many times in my life I can point to things that have happened to me or around me, and those things have molded me and prepared me for certain situations. Case in point, my mother has a cousin, Chip, who has been disabled since birth, but only physically at first. After surgery as an infant to repair his spine, he was left with additional disabilities, including mental disabilities. Once his parents died and his adult caregiver was unable to care for him due to her health issues and age, Chip moved from New York down to Alabama to be close to his uncle, my mom's father. Then upon my grandfather's death, my mom became his caregiver. While Chip lived in a nursing home once he moved to Alabama, my mom took him out every Wednesday evening to dinner and to the bookstore, one of his favorite places. And the years I lived at hime with my parents and then as often as I was home from college, I was blessed to tag along. Then we visited every Sunday and additional days of the week as we could. Chip was in a wheelchair. He had an enlarged head, an eye that pulled to one side, this FABULOUSLY almost white, grey hair, and a sense of humor that was worth a million!!! But he had his moments, challenges, and mental meltdowns that rival some of Garrett's! I was always so proud to push Chip's wheelchair, operate his van's wheelchair lift, help as I could. I almost dared people to stare, whisper, comment even to the person walking beside them. It was like I grew up facing the issues I fear, and had no earthly idea at that time, that it wasn't just about Chip and his care and our love for him, but it was about my future. Chip has since passed away, but wow, did he change my life in so many wonderful ways. And sometimes I sense he is right here with me, adoring me as he always did and encouraging me to do the RIGHT thing.

And that's my heart tonight. It is very heavy. Garrett will be 7 years old this summer. The behaviors that were fine when he looked like a toddler are no longer looking acceptable as he is now tall and obviously older. He does get more looks. People notice. And while most people are kind to him/us, there will be those tough times when those few cold, cruel, heartless, maybe just really hurt, people lash out or make fun of him. So while I am not ready for this chapter, the book continues to be written, and I have no power to stop it.

So maybe tonight is the warm-up for my skin to thicken. And maybe it is also a reminder I need, and welcome, that I MUST be on Garrett's team.

Godspeed,
Clara-Leigh

She Took It On Herself.........POWERFUL TESTIMONY

This morning while Grouchy was talking to a college friend of his, Kimberly, he walked over to me and said, "Here, tell Clara-Leigh your story." So I greeted Kimberly, whom I have only talked to a couple of times but whom I absolutely appreciate and respect for her kindness to us and her incredible work in an organization she worked to create that helps returning veterans and their families have a camp-type experience that gives the entire family r & r, counseling and the patriot's welcome they deserve. And then this story.......was shared via phone:

A few days ago Kimberly walked into the grocery store to get a few things while her husband waited in the car. She walked into the veggie section and noticed a boy who was behaving in a way that made her realize right away that he was probably autistic. The boy was playing with signs in the area and had just started to twirl and touch a promo sign hanging overhead and just had "that look." Kimberly noticed the mom right away with one of those "I better hurry up and get this shopping done while he is somewhat occupied" looks and also noticed the mom had another child in her shopping cart. About this time a man walks up to the boy and grabs him by the arm and begins to verbally scold him for playing with the hanging sign. The mom turns to the boy and the man and begins APOLOGIZING to the man!!! At this point, Kimberly said that the mom became me, and that getting to hear our stories through our blog, she knew she had to do something. So she acted, right then and there! But not in a way some would have with anger and negativity. She brilliantly turned it around and approached him, essentially telling him to stop, but then he started telling her about how well-behaved his children are. And then she dug her heels in. "So do your children have any issues? I mean, do they have any problems or challenges or anything like that?" WHAT?? Isn't that about the most prefectly-formed method of dealing with someone like this?!? He says his kids have no issues, but as it evolves, the other shoppers have stopped walking and shopping and are now all focused on the confrontation at hand. The man starts the babbling about his kiddos and then turns and walks away with one of those lame flips of the wrist to put off the other adult in the conversation, Kimberly. As he walks away, Kimberly sees that no only has the mom teared-up, but she is now crying. Kimberly hugs her and bursts into tears as well, and then the shoppers start the APPLAUSE!!!!!! This could have been a movie scene! Needless to say, she returned to her husband in their car, and she was a crying mess telling him to, "Just drive!" I am so inspired by her willingness to take up for OUR KIDS!!!! Each of these children is created by God, and not only should a mother of an autistic or "special" or disabled child EVER need to apologize as she is as raw and real and exhausted and kind as any woman on earth, but she did NOT ask to be in this situation, nor did she EVER intend for her child to impose on any other human in any way. But it happens. We have to shop, occasionally go to a gym for a workout, take our family to church or a movie.....We find ourselves feeling like we need to tiptoe around the rest of the normal world, feeling like we don't want to disturb, disrupt or inconvenience anyone. But in truth, our children have the right to be who they are as they own this air we breath as much as the man in the produce section. It's true!

Kimberly is such an amazing lady, and her willingness to step forward on our behalf for another mother and child brings me to tears tonight. THANK YOU!!!!!!

Let us all use moments like this to inspire us to the ultimate compassion, love and kindness that God pressed into each of our souls as He sent us to Earth. Stand up, don't be afraid, and be an example.

Godspeed and be strong!!!
Clara-Leigh

Workin' the System

After a day of school, then Garrett's Personal Care person coming for three hours, Shelby (from previous post), his developmental therapist, arrived around 4 pm only to discover that Garrett has taken it upon himself to draw "Mat Man" on the wall..........the off-white wall of our 5 year old house.....with DARK BLUE MARKER!!!!!



A bit of history: If you have never heard of Mat Man, he is basically a smiley face with a body, legs and arms and is used in most occupational therapy and special education rooms as kids who do not naturally begin drawing happy faces or stick figures are taught the basics over time, which for Garrett has been, oh, about 4 years now. But to date he had never drawn one unprompted, on his own, for his own pleasure. Well, that all changed!!!



When we arrived home, Garrett and Shelby met us at the kitchen, and Shelby hands me our camera and says, "You might want to look at this. Might be a blog!" And here is what she showed to me:

Much like a previous blog when a visiting little boy lost his mind trying to make sense of Garrett not understanding a video game, when in a former life I might have been saddened or angered, this time I had the same thing happen!! I started laughing, and then almost crying because the fact he drew on the walls of our five year old house's walls with dark blur marker on almost white walls means HE CAN DRAW MAT MAN!!!!! ALL BY HIMSELF!!!!!!! HOLY COW!!!!!

But here is the very best part. The artist worked in secret, apparently with no one noticing when he was creating his masterpiece, so when Shelby saw it she called him to it and talked to him about how "we" do not use markers or colors on the wall. But you know what HE SAID????? "But Shelby, it's YOU!!!!" And then he probably smiled that great smile and flashed those magical blue eyes and made her turn into a useless, loving blob of love and understanding!!!

And that, my friend, is how our boy is workin' the system, at least for now. I am sure he has more great tactics up his sleeve (which he is currently addicted to chewing on, thus ruining all his long sleeve shirts and sweaters).

Oh, and by the time we got home Shelby had ALL of the blue off of the wall, thus the need for the photo! And there is another blog for another day......having caregivers who love our family enough to savor the good, entertaining, hilarious and tough things right there alongside us.

Godspeed,

Clara-Leigh

The Tears Just Pour

The tears, they spill out, flow over, squirt out, and sometimes flood the room I am occupying when I let myself take in all the love and support our little guys receives. Just today we had a personal care services worker who cares for Garrett four days per week hand over most of her days to a new worker, and not because of any problem but because she was working with Garrett temporarily as the PCS agency was trying to find someone who lives closer to us. Both of these young ladies are beautiful, smart, kind and compassionate, but seeing one have to step away and thinking of how special she is to me after just a month of working in our home with Garrett....WOW!!!! I CRIED!!!

I am one of those people who rarely will cry at a funeral but will use a whole box of Kleenex at a wedding!!! There is just something miraculous and very emotional about that bonding of two people....well, unless you know you are attending someone's "first wedding," as Grouchy once described a friend's upcoming ceremony. Let's face it, we could all tell it wouldn't work.....but the two young lovers could not!! And when it comes to the emotions I have toward the people who work with Garrett, I am a total, useless mush!!!

I cry at the end of a school year as we say so-long to teachers, therapists, and aides. I cry when a therapist moves away or changes jobs and says goodbye. I cry when a caregiver has to move on to other clients and away from our lives. And I even lose it sometimes at doctors' offices when the doctors and nurses love Garrett so completely!! What a mess!!!!

But for now I want to introduce to Garrett's Shelby. She has probably graced the blog before, but this is a recent photo of them together. Shelby is Garrett's developmental therapist. She is a full time high-schooler, and a perfectly delightful, beautiful, fun and SOOOO SWEET young lady. She has out total trust and complete appreciation for the 22+ hours she has Garrett every week. And this web site doesn't have enough space available for me to expand on how amazing she is with Garrett!

Garrett and "His Shelby"

For now I don't have to cry about "Garrett's Shelby," and I know someday she will have to move on and continue with her dreams......or maybe we will lock her in our guest house and feed her and care for her but never, ever let her leave!!!!

Shelby, thank you for loving Baby Robot so much!!! We adore you!!!!

Godspeed and thank a caregiver today!!!!
Clara-Leigh

THAT'S Exactly How We Feel......but can't express it!

"WHY DOESN'T HE UNDERSTAND!!?!?!?!?!??!!"

We recently had some very dear friends fly from the eastern side if the USA to spend 5 days with us. We had a marvelous time complete with campfire, 2 days snow skiing, horseback riding, a night at a fun hotel with indoor pool and just hours of kiddos playing! Our friends have two kiddos, a third grade daughter and a first grade son. They are such fun, kind kiddos, and we cherish having time to really get to know the kids finally! We knew the parents from Grouchy's days of flying F/A-18 Hornet fighter jets in the navy and have stayed in pretty close touch over the past 14 or so years. Beautiful people!!

The day they arrived, Garrett and their boy, who is a year older than Garrett, began to play. Well, it was more like the friend playing with Garrett's things and Garrett following him around chatting his ears off all the while! But an interesting thing happened. Both boys got their Nintendo DSi games out and sat together in Grouchy's recliner and played. I was marveling at how "normal" a sight it was to see Garrett just quietly sitting and interacting with a pal. At one point, they decided to play "versus," or put the same game in each DSi and choose to race cars against each other but both be able to see it. Garrett agreed, but I knew he probably didn't know what on earth it meant and like he does with the Wii, would NOT want to compete against anyone. Don't know why, but it's just that way with him. The other boy was so kind to try to show Garrett how to set it all up, and they got ready to play, but Garrett freaked out a bit and just decided he didn't want to play "versus." The other boy tried to explain, encourage and mmotivate Garrett to play, but Garrett just turned off his good attitude and quit trying. At this point, Garrett's friend jumps up out of the recliner, stands to face Garrett and starts screaming, "WHY DOESN'T HE UNDERSTAND......AAAAAAAHHHHHHHHHHHHH!!!!!!!!" Then the child takes off running away from the recliner and down our hall into Garrett's room, screaming in frustration all the while. Of course his amazing mom sprints back to talk to him to try to explain how to handle Garrett. And while maybe I should have found myself feeling bad for Garrett having a pal scream at him, I didn't feel like that at all! Instead, I stood in the kitchen in awe of the situation, a smile beginning to come across my face as I realized that Grouchy and I feel JUST LIKE THAT soooooooo many times daily when it comes to all things Garrett. Bad thing is that while it is okay for a first grader to react to Garrett like he did, it ISN'T okay for Grouchy and me to show how we REALLY feel!!!! I shared this with the boy's mom, and she was worried about Garrett and so kind to him and to me. I may have caught her off guard when I told her that her son said what I am usually thinking but cannot! And I meant it!!! Our friends had briefed both of their sweet kiddos on dealing with Garrett, but you cannot expect a normal elementary age child to really be able to tolerate things that are so darn weird every minute!!! The little boy was so kind to share so willingly with Garrett. They took turns on 4-wheelers and did enjoy some play time together. But this moment will never leave my memory as I see glimpses of the insanity through others' eyes!

I guess it all boils down to the hard part of being the grown-up. It's having to save face, be the example, increase tolerance.....for us anyway. Absent are the days where we can have a kid over to play with Garrett and not have to explain the exceptions we have to make or the reasons there is no reason in Garrett's dealings sometimes.....many times. It has to be hard for other children, but then again, maybe not. At least they can express their bubbling-over of emotion verbally and let the frunstation flow. I guess you all let me do that here, so I need to be thankful!!

Lots going on here, but off to do my nightly reading of the Bible as I picked up an awesome Bible designed to be read over the course of a year. I have always wanted to do this, but finally bought a Bible organized for this purpose and made myself stop everything else and focus on God's word every evening.

Many fun things to blog about soon, but not tonight. PLEASE pray for my online friend Debbie and her children, especially Hudson, who has Mito and recently started the experimental miracle drug. And the day he started it, his daddy, passed away. I sometimes wonder if this life can be anymore cruel. But then I try to keep remembering.....It isn't about THIS life.......

Godspeed,
Clara-Leigh