Tuesday, January 31, 2012

Shared My Bed With a Younger Man.....While Grouchy Out of Town.

And I feel no guilt whatsoever!!!

It all starts with Garrett's tummy. He has battled constipation for years now. And recently we ran out of one of his Mito cocktail supplements, Folic Acid, and the compounding pharmacy took a while to get it in, so he was off of it for about 5 days. Meanwhile, he started pooping daily.....AWESOME!!! But then he stopped. Then a day later we got the Folic Acid back into his little body and the poop came again, every night!! It was great! Then three days ago, that stopped. So I had to add more Miralax and then ExLax as well. So yesterday he was grumpy about pooping a bit here and there and made he couldn't wear big boy undies. Then while Shelby had him last night he was still very upset and not passing anything but dry bits here and there. So Shelby put him in our bed since his bed linens were still drying from the previous night where he was so constipated he dug in his diaper and bum to get it out and smeared it all over himself and his linens in his sleep. He fell right to sleep on my bed with the heated mattress pad on. Then he woke once and Shelby offered to let him take a bath and he said no and fell asleep again.

Addie, Ainslee and I had been to a 4-H community service planning meeting and when we came home Garrett was fast asleep. I got the girls to bed in Addie's room and went to check on Garrett. He was zonked. I made his bed but thought it would be good to let him sleep with me if he would. That usually doesn't work as he wakes and realizes there is someone IN THE BED to talk to and won't be quiet!!! However, last night it worked. He was so restless and rolling into a ball and rocking and rubbing his tummy in his sleep. Finally, at 2:00 this morning the flood gates opened and I thought it was over. He went back to bed. But nope, the gates opened again at 5:00, 6:00 and then three more times waiting for the bus just around 7:00.

SO there ya have it, my confession of sleeping in the bed with a young, slim, blonde.......and his STOOL!!!!!

He snuggled with me before we got up, and his little body feels so tiny and skinny but sooooo soft and sweet. He sat on my tummy this morning in the dark and took my cheeks in his little soft hands and said, "I love you Mommy," and then kissed me on the lips and then gave me an Eskimo kiss. And I melted!!!! I am in love....again!!! But with TWO men now!!!


Monday, January 30, 2012

Who's the Old Guy???

I may have blogged this cute story before, but it keeps coming back up in my mind to share, so here goes!

We are blessed to have a family nearby who have become very dear friends. In fact, of the parents and seven kiddos, I think every one of them has watched Garrett for us at one time or another.....the oldest son even on the weekend before his OWN WEDDING!!! They don't make many people like that anymore!! This happens to be Shelby's family!

During the summer, they let Garrett go to church one Sunday and then to the grandparents' home some afterwards while Grouchy was traveling for one of our business ventures or his real job, and I had to be somewhere with Addie and Ainslee where Garrett would have been in danger or a huge distraction. Garrett had taken a liking to the movie "Up" at that time. He loved to watch it over and over and over and.....you get the point. If you have not seen the movie, and I recommend every adult should see it, the three main characters are an older man, a boy and a dog. Well, after church, Garrett piles into the backseat of one of the family's many vehicles right next to Grandpa. Grandpa apparently is fond of Garrett and Garrett likes him as well. But as the car starts down the road Garrett bursts out, "Who is the OLD GUY!?!?!?!?" Everyone got really quiet for an awkward moment until Grandpa answers, "Well, I guess I am!!!" And then a roar of laughter followed. But what was really funny was that not long after that exchange and laugh, the family members in the care realize Garrett was asking the name of the old guy in the movie "Up!" Then that brought about even more laughs!!!!

Leave it to someone in my household (usually me) to say something completely obnoxious, out of place or plainly innocently WEIRD!!!!

And to Grandpa, thanks so much for loving my boy!! I hear he was perched in your lap yesterday at your house while your sweet family cared for him. I appreciate all of the love and friendship each of you give my little man!!!!!!


Sunday, January 29, 2012

Back In the Saddle Together

It would be a long, long history, so I will be brief. In another life before kids, Grouchy and I had young horses at the same time.....several throughout the years, and we enjoyed working together getting them from the point of scruffy, unruly 2 and year olds to mature, riding horses. We loved it. We enjoyed our time together working these horses as much as we enjoyed the horses. But as is probably obvious to you from our three kiddos and the caboose being Garrett with his needs, the horse starting hobby went WAAAAAY to the wayside. Until now......
Last year Oscar was looking for a young horse prospect to be his "forever horse," and after many drives all over Idaho and Oregon seeing young horses, Grouchy found the ad for the horse you see him on in the photo, Smokey. He was inexpensive, Grouchy's FAVORITE color, dun or buckskin, AND he was HUUUUGE!!! Oh, and he was kind and smart and oh so lovable. And he was three and never ridden. Problem was that when we said to the couple selling that we would buy him, they threw in that they would not sell him without his little 2 year old paint half brother Dusty coming as well, at even a lower price than Smokey. So we agreed and brought home a 2 year old and a 3 year old who were both unridable. Hhhhhhmmmmm. I thought we were nuts and so did my parents!!! Grouchy and the girls and I worked the two geldings, Smokey and Dusty, in the round pen from the ground and even saddled them, but knew we didn't have time to devote to the very important first 30 days of riding/training. We were blessed to be put in touch with a father-son team of reining horse trainers about 6 miles from home, and we sent both of the babies to them for the first 30 rides. We got them home and I was skeptical, to say the least. I have NO BUSINESS on a two or three year old nutcase at this point in my life. The LAST thing we need is for Grouchy or me to be laid up and all broken in some hospital somewhere!!!! But I have been completely surprised. We have ridden the two brothers out of the round pen and down the lane, through fields and down the irrigation ditch roads with absolutely no trouble. Will they catch us off guard? Probably. Will they spook? Certainly! But I am just so happy with the sound minds they both have as saddle horses now!!!! So enjoy the photo above as a glimpse of Grouchy and me being blessed with the gift of returning to our favorite pastime, finally, and cherishing this time more than we ever could know we would!!!!!


Saturday, January 28, 2012

He Earned It ! ! !

Earlier this week Garrett and I went to the local grocery store together. He pushed the cart and I did all I could to protect my Achilles tendons and all the innocent customers not accustomed to Garrett watching the wheels on the cart spin as she accelerates down the aisles!
We reached the pharmacy area, and while I waited to pay for a few of his prescription refills, he wandered a short ways to a stack of toy trucks with a plastic track/road. He fell in love and asked to buy one. I told him he could not buy it that day, but then it hit me!! "Garrett, it costs eight dollars. If you can be good with Shelby this week and do your "work" (developmental therapy activities she has to have him do weekdays), then you can earn dollars. And when you get eight dollars, then Shelby can bring you back to this store and you can buy the cool truck/road/track set with your VERY OWN EIGHT DOLLARS!!!" Wow, it's not often that sort of parental brilliance hits me, but it is hard to motivate Garrett to get his "work" done, so I figured it was worth a shot!!!! I took a quick photo of Garrett with the toy and him pointing to the price. It was cute. I sent it to Grouchy and my mom and Shelby to let them in on the deal. Shelby gave it a thumbs up so we were good to go!
Garrett stared into space for a while, and I assume he was pondering the deal and trying to process it all, but he walked away without any frustration. We bought our necessary groceries and drugs and left with no problem.

So all week he has been doing good things here and there like going potty when we asked.....#1, that is, playing nicely with other kiddos at the Scottish Playground (McDonalds, and yes, we own stock in the Golden Arches, no joke!!), and buying his sisters the toys earlier in the week. So today after we knew he had earned all eight dollars, Shelby handed him each dollar and said what he did well that earned him the money:

Then Shelby took Garrett to the grocery store to buy his toy! He had his money all tucked inside his jacket pocket per Shelby's thoughtful recommendation. Here he is putting the toy into his very favorite type of shopping cart:

And this is a very proud boy pulling his new toy to the checkout counter!

Can you see the look on his face and tell he is on his tippy-toes handing the toy to the cashier. Now keep in mind that before last summer, him seeing ME putting anything on the counter to pay was a HUGE deal, so Garrett handing anything onto the counter...NO WAY!!! We think maybe he thought the cashiers wouldn't give the things back!! Took MONTHS to get past that, and here he is gladly handing over his prized toy!!!
And here is the real deal after Shelby helped set it up. Honestly, this is the best $8 toy I have ever seen!! Easy to assemble and comes with a flexible track/road and not one but TWO little AA battery-powered monster trucks, a bridge, a tunnel AND an alligator who opens and closes his mouth when the trucks pass a little lever. Oh, and a vermin who comes out of a tree stump when his lever is passed. And yes, I will send you one from our tiny market for $8 plus shipping if you really want one......yes, I am serious!!!
And in the final photo above, Garrett is in serious stimming mode.....that's Autism for focusing and doing strange movements or posture while doing so in Garrett's world. He is beginning to flap his hands and FEROCIOUSLY grinding his teeth as he watches the two trucks speed around the neat little track.

I am so proud of this little dude. And I am so thankful for all of those supporting us through his daily care, medical care and our family's mental care....ha!!!!

Thank you for taking time to duck in and check in on us! Next time you see a little kid buying something in a store, don't take for granted that child's experiences and challenges that may have finally led him to that tiny bit of greatness and independence. Garrett might as well have graduated with his PhD in Astrophysics today as far as I am concerned!!!!


Friday, January 27, 2012

Me, the Only Person Crying In WalMart Checkout

Garrett and I went to WalMart the other night while Addie and Ainslee were trying a ballet class. I had to get only a few things, so it was quick. And that's not Garrett's favorite way to do WalMart! We get to the checkout area where he is known to have sumo wrestler-size meltdowns, but he stays with me and starts looking at all of those racks of tiny impulsive-buy items by the cash registers. He picks up a toy and asks if he can buy it. I say no. It's one of those clear, plastic globes on a stick with lights that spin inside. It was a miniature one and was about $2.50. He doesn't protest, so I turn away to put the items on the belt, assuming he is returning the toy to its place. When I turn back to him again, he is doing all he can to cradle three of the light toys in his little arms and smiles so big. And I say, "Garrett, now I said 'no.'" But then he completely wows me, melts me and breaks my heart with a concept I had no idea he could manage!!
"But mom I have three! I want them for my girls. I have one for me, one for Addie and one for Ainslee. All three!!!"
I almost fell over!!! I was excited, proud, surprised and so THRILLED at this type of thinking and consideration!!! It was a HUGE mental leap for him to verbalize that AND to think of his two sisters!!!!!!!
So I gave him a huge hug, holding up WalMart 6:00 shopping rush hour and told him to please put the three toys onto the belt so we could pay for them. Bet I was the only mom crying in joy in the checkout line at WalMart!!!

Thursday, January 26, 2012

Appreciating Those Short, Peaceful Times.

HUGE are these times! Until recently, Garrett would not slow down enough to give anyone a chance to really hug him or snuggle with him. Now it is almost daily I can catch Grouchy in the recliner with Garrett piled on top quietly, peacefully. Granted it is only for an average of 5 seconds, if that, but it is appreciated!!! I hope you can see the joy and peace on Grouchy's face. And you should even be able to see a sense of peace in Garrett's sweet face. I love these two boys!!!! Thank you God for these moments that while brief and tiny give me that thread of hope that keeps me going!


Wednesday, January 25, 2012

Make-A-Wish Volunteers

Barry, Garrett and Janelle

Meet Garrett's Make-A-Wish volunteers Mr. Barry and Ms. Janelle! Monday evening we met them at McDonalds, or as Oscar calls it, the Scottish Playground. Initially, Janelle asked if we would meet them at a restaurant for a sit-down meeting to complete paperwork and get to know each other, but then I let her know Garrett doesn't do sit-down places so well, so we agreed on the Scottish playground! They had gifts for Garrett and the girls are were so incredibly kind!!! We signed papers and then talked about the possible wishes and dates. We had a Make-A-Wish employee spend time with me over the phone to get ideas. So Walt Disney World in Orlando was the first wish. And then dates. We have to be cautious not to try the hot, summer months as Addie and Garrett both have trouble with the heat. Then we talked about October, September or maybe March. Janelle and Barry wanted to shoot for March, so we left it at that. Then today we got a call from Janelle saying March would not work, but that they want to try for October. While we were excited thinking it might happen so quickly, I know that we will have fun preparing for our trip and helping Garrett better understand what is going on. We want him to know some things about Disney World and let him watch some videos and such. Maybe by October we will also have a bit more maturity under his belt. That would help with the travel part at least!!

We have not left the state with Make-A-Wish yet, and already I am humbled and thrilled and overwhelmed with people's kindness and generosity. It's just amazing.

And of course we will pray for continued good health as we wait for our trip!!

And speaking of good health, we are on the schedule to see Dr. Saneto in Seattle next month. I cannot wait to see him in person again and have my little Garrett with a closer doctor whom I respect so very much. I am interested in gaining his perspective on Garrett and his care and future. I met Dr. Saneto in Chicago last summer at the United Mitochondrial Disease Foundation's symposium, but never got to talk to him about Garrett's case. We did blood work for him here a couple of weeks ago, and all we have left is the office visit and possibly an MRI since Garrett has not had one since he was 16 months old. We will fly over on a Sunday and then return Monday night or Tuesday, depending on the MRI scheduling and recovery as he will have to be sedated for that.

Reading the Charles Stanley Life Principles Daily Bible, and my eyes are crossing and I haven't picked it up yet tonight, so I best sign off and get to "work!"



Sunday, January 22, 2012

Grouchy's First Blog Contribution!!!! Great Read!!!!

For the first time, I have the honor of a guest contributor on the blog! The subject of many photos and great stories to date, here is the man, the legend, my best friend, my beloved husband, Grouchy, bringing a daddy's perspective to parenting and loving our sweet Garrett. I know you will enjoy this insight, and by the way, he is an INCREDIBLE writer!!! And that's how he made me fall for him....through 6 months of letter-writing before we ever met in person. I will blog that another day when I have LOTS of time. Enjoy!!! Godspeed, CL

Garrett’s Done it Again! Or, ‘Where’s Garrett?’

No, he hasn’t pooped down his leg, broken another expensive TV, Wii, or other electronic device, or poured his raisin bran out on the table. Well, actually he has done all of that and probably will again, but it’s just not what I’m talking about. He’s stolen another heart. I’m Garrett’s Dad to another person I barely know because she met Garrett at a little gathering and he wrapped her around his finger.

‘Where’s Garrett?’ is a question we ask each other multiple times every day. It’s a combination question of who’s watching him, what valuable items are in danger, is he clean/dry, is he safe… and so on. But to others, it’s a genuine curiosity and hint of ‘I wish Garrett were with you’ when we see them without Garrett.

Garrett has a string of beautiful teenage girls who call him on 5-6 days/week. One of them gets him off the bus at noon and plays with him until 3:30 when another one intercepts him and plays with him until late evening, often times bathing him, feeding him and putting him in bed. Garrett’s 6 and he has more - and more concentrated - female attention than I’ve ever had… And everyone knows my lovely wife gives me more than I deserve, so that is not a complaint. Even though these charming young ladies are compensated for their time, their dedication is a tribute to Garrett, not the almighty dollar.

Garrett has his own horse trainer. Oh, he doesn’t have his own horse yet. But he has a horse trainer that is more interested in him than the horses I paid him to train. I met George through a mutual friend. A grandpa who is easing out of the training side of horses, but still making his living shoeing the critters, George is a reining horse champion who works with his son, Mike, training and shoeing. They’re the kind of pure authentic country neighbors we have that both talk bad about the other, but with a smile so wide you know it’s just their way of loving each other. So when I went to see how our horses were doing that he was training, I tried to pick an evening that they were riding and that I had Ainslee with me, but not Garrett and that wasn’t Gymnastics, AWANA, Dance or piano… so I ended up with Garrett and Ainslee. As we all three approached the round pen where Mike was riding one of our young ‘uns and George was assisting on the ground, I was busy directing Garrett and preparing to apologize for whatever he might unexpectedly do or wherever he might uninvitingly go. But after a couple of minutes of one eye on the horse and one eye on Garrett, George exited the round pen and left me to watch the horse being worked, assuring me that Garrett couldn’t hurt anything around his place. ‘Oh, you don’t know Garrett,’ I thought, as George disappeared, presumably to take care of some of the other mounts around his barn. Next thing I know Garrett is in the middle of the arena with a somewhat broken tricycle in tow and George closely behind. ‘I’ll get him, George,’ I holler, expecting George to be miffed at the interruption of his cold and windy evening routine. ‘You just stay with Mike,’ George hollered back. ‘I’ve got Garrett and we’re just fine.’ ‘We’re just fine,’ I thought. George – a nice guy for sure, but someone who doesn’t even admit to liking people and who has thousands more hours of saddle time than social time – following Garrett like he was his own grandson and forgetting about his chores or anything else. Now, every time I see George – or Mike for that matter – the first question they ask is, ‘Where’s Garrett?’ George stopped by yesterday to check on one of the horses he had trained who is a little lame. He did a quick hoof check, then it was back to the backyard to watch Garrett play. Come to think of it, the only time I’ve seen George laugh is when he’s talking bad about Mike, or watching Garrett.

Ken’s shop is just a couple of miles from our house. Ken knows every rancher, farmer, hunter and fisher in the valley, and on any given day, if you stop in for more than five minutes, you’re sure to meet one of them who’s also stopping in for five minutes. Now, five minutes at Ken’s shop is not five minutes on the clock. Five minutes is a figurative term used to describe the amount of time you actually lose by stopping in, but to be sure, it’s not ever less than 15 – and that’s if you’re in a hurry. It usually involves a cup of coffee if he’s open, or a cup of something better if he’s closing. Ken enjoys his shop being the gathering place to discuss the latest roundup or harvest data. But Ken’s shop is not ‘kid-friendly.’ It’s got big tables of canvas and big machines around to sew it all together, or monogram it, or cut it. But when I stop in with Garrett, Ken is more than willing to donate his flat dolly to the cause of Garrett of pushing it around his shop making train noises, or bus noises, or just noises that he thinks coincide with whatever maneuver he’s executing. And, while notably disturbed by the activities of the kids of some others who stop by and relinquish control of their little ones to the open space of Ken’s shop, Ken is very interested and even engrossed in little JG and his questions about the machines and material that lie around in seemingly random fashion. Invariably, after being offered a cup of coffee, the next question I get when I stop by without Garrett is, ‘Where’s Garrett?’

Heidi is the friend of a friend. A sincere young lady we met at a Dutch Oven cookout at someone’s house. In fact, we didn’t even know the hosts, so we tried to decline the invite based on that fact coupled with the fact that we had no sitter for the evening. After being assured we and our kids were welcome, we found our way to a nice contemporary house in a nice neighborhood. The primary gathering was around the fire in the spacious backyard. No other children were present, and, as usual, Clara-Leigh and I ended up on separate watches, with her manning the inside of the house where people only transited to refresh drinks or raid her chips and dip, and me by the fire or in the area looking out for Garrett when he came outside. Later in the evening, worn out from entertaining Garrett inside, CL made it outside to the fire with JG. And, in spite of the absence of any other children, our two girls had done their usual integration with Addie talking to one or two of the other adults, Ainslee entertaining any and all who would pay attention and Garrett… Garrett was with Heidi. Or, should I say, Heidi was Garrett. Unbeknownst to either of us, Garrett was wrapping another beautiful young lady around his little finger. We would find out later at another similar gathering of mostly the same people when Heidi asked us about Garrett and then went on to explain the connection she had with him, the amazement she had of his mind and his wonderings and his wanderings. She wants to keep Garrett. She wants us to give us an evening off, but really what she wants is an evening on. An evening where she can escape this silly world and all its convention and go with Garrett to that mystical place where he lives in wonder and amazement at the simplest things that the rest of us take for granted or think we understand or are annoyed by.

So, where’s Garrett? Well, on any given day, Garrett can go to the fair – which is our driveway and a big plastic roller coaster that Santa brought; or he can be on stage – which is our living room floor coupled with an iTouch, DSI, play guitar or any other musical instrument to which Garrett can march, gyrate, or do the chicken dance in perfect rhythm; or he can ‘go really fast’ on Dad’s tractor, which is just me and my old 1980 model IH 1086 running it for the sake of running it, but having more fun than it should be because Garrett is propped up on the ledge behind the seat screaming with excitement as go down the ‘roller coaster’ of our driveway and ‘speed’ down the road at 18 Mph to Mr. Bob’s just to turn around do it again; or he can drive his school bus - an old tricycle from his therapist office that they had to get rid of because it no longer met safety standards – with one of his lady friends in tow holding on to a rope and sitting in an easy roller designed for someone 10 years their junior smiling and laughing as they glide through Garrett’s world with him. Where’s Garrett? He’s in a beautiful, magical, mystical place without clocks or schedules or assumptions or convention and anyone who gets to join him gets a glimpse of a better place as well. Yes, my amazing wife and I can always use and appreciate an evening off – an evening to spend with each other or our two little angels who live in the same world as we. But, maybe what we need more often is an evening on – an evening without the rigors and stresses of the clock, the convention, the coldness of our ‘normal’ world.

As for me, I think I’ll go to the fair for a little while this afternoon.

Saturday, January 21, 2012

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!!!



Friday, January 20, 2012

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'!!!



Thursday, January 19, 2012

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.


Wednesday, January 18, 2012

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!!!

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.



Tuesday, January 17, 2012

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!!!!

Sunday, January 15, 2012

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


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.......