Sunday, August 29, 2010

Back to Weebly for blog for now, please....

Due to many, many frustrating times trying to post photos here on Blogspot.....and you KNOW I love my photos, I have decided to blog back on for a while until I get this resolved.
So until further notice, please check my original web site and click "blog" on the menu to see lots of photos from our cross country move:


Day 1 of 4: To Idaho

Grouchy, my hubby, has named out move "Little House On the Prairie On Steroids." Somewhat fitting for modern times, but our reasons for heading west are much like the popular books and television series.
This morning we kissed Ainslee and DiDi bye and headed out around 9 am. We made more stops today than we will in the next three days. We had to adjust the load on the 20 x 8 bumper pull trailer behind my Yukon XL as it was swaying with the load of two kids' fourwheelers and a Polaris Ranger ATV. The horses did great. The dogs, Camper (Pekingese mix) and Remi (huge yellow lab) ended up in my backseat, and Ainslee's kitty, Diamond has a two story condo we made for her out of a dog crate. She has food, water, litter box, need for freedom!! So she is safe and sound!
We found an adorable little reining horse ranch in Weatherford, Texas, just west of Ft. Worth. Pecan Bottom Ranch has a new barn with the most adorable guest apartment in the barn. It is like pages from Pottery Barn catalogs!! It's perfectly appointed, and the owners, Nancy and Alan, have made us and all the critters at home for the evening. Nancy even has milk, OJ, coffee, half and half, fresh sliced fruit, yogurt, pastries, cereals and so on. And so comfy!!!!!
We will be turning in very soon and getting up very early for a 12 hour drive to stay with friends at their ranchette in Colorado Springs. Since the movers will likely not deliver our goods to Idaho until Thursday or Friday, we slowed our trip after tomorrow, so that instead of getting to our new home in Homedale, Idaho, on Tuesday, we will just drive from CO Springs 7 hours to Salt Lake City, Utah, and then on Wednesday drive 6 hours on to the new house.
Here are a few pics from the day.....Remi hanging with my while I drive, Ernie and Lucy grazing at Pecan Bottom Ranch, and then a photo of our little B&B for tonight. Whoops, photos won't load. May have to go back and crank up our old blog. Photo attaching here is a pain and sometimes doesn't even work at right now....ggggrrrrr....
Thank you for continued prayers for safe travels!!

Friday, August 27, 2010

We are MOVING now!!!

The items are packed

The truck is here

Time to farewell

Our town so dear.

Nine years in a house

That was such a great home

So hard to just leave

But soon we'll be gone.

Tiny fingerprints soon gone

Pitter-patter of baby feet a hush

As I type this little ditty

And become crying mush.

A huge thanks to our family

Who love us so much

And of course to our friends

How we were blessed by such!

In prayer and in faith

We make the long trek

Trusting God's loving arms

Geez, writing this is making me a wreck!!!

Our new home in Idaho

Is where we will make our new bed

Among our dreams of more land and healthier kids

We know we've been led.

So I log off my laptop

In hopes of fun times

When you pack your bags

And brave the airport lines.

When we invite you to come visit

Please know we are sincere

We'll have the guest house ready

Because you are so dear.

So long to people of Gonzales

We'll be back soon

And enjoy coming to stay

In YOUR guest room!!!!

Sunday, August 22, 2010

Big Horse, HAPPY Little Girl

My precious Ainslee finally has her steadfast steed, Ernie, home. He was on Grouchy's parents' farm enjoying an endless supply of belly-high grass for most of the summer, but now he is home for moving week, Coggins test, vaccinations and health certification for our travels across the country during our move.

I looked out yesterday and saw this huge horse with this tiny girl and the biggest smile EVER!!!!

Enjoy seeing the outside of a horse work magic on the inside of a human!



Saturday, August 21, 2010

Here are a few recent photos of the kiddos. First is Ainslee with her frogs she caught and wanted to keep...
Next is Garrett being pretty and silly!
Last is one of a beautiful series of photos of Addie making a "plant wish."

Wednesday, August 18, 2010

One week 'til movers...

Just one week until the movers arrive to pack our household goods.
Grouchy made it in from his two weeks of work in Alaska. We are so happy to have him home!!!!
Vet came out today to get all of the tests, vaccines, health papers and all started for the horses to move with us next week. So far we have planned to take three horses with us, but one may stay back....waiting to see if she stays or goes.
In the morning, Addie has to be at Woman's Hospital in Baton Rouge by 8 for a pelvic and abdominal ultrasound, a glucose tolerance test and some other labs requested by her pediatrician for some abdominal discomfort and other issues that have been around for over a month.
Garrett is still doing well in school. He had an eye exam today. He passed with screaming, I mean FLYING colors!!! Great news. We got a name of a good eye doc in Boise. The local doc says to take Garrett back in two years. Cool!!
Wow, that's all I have in me for chat tonight!!! Grouchy is home and I am happy!!!!!

Tuesday, August 17, 2010

Addie, Ainslee and Sophia's Lemonade Stand

Sunday afternoon we enjoyed having our new niece (by Aunt Becca and Uncle Lee's wedding) join us at the house to play. After they made a blanket fort in the girls' room, had a couple of snacks, played some games and watched a few minutes of television, the girls ran up to me with a big sign made of butcher paper advertising a lemonade stand to raise money for the upcoming MDA Telethon. We made a pitcher of lemonade, found some paper cups and some change and the girls ran to ask the next door neighbors (who are in a subdivision next to our rural lot) if they could sell out of their side yard. The neighbors agreed, so off we went to their yard with a big table and all the other items for the big sale. Just as we were almost there, it began to rain!! We retreated back to our house where the girls watched t.v. a few more minutes, and when I noticed the rain stop, we headed out again. We were all excited about their idea, but then I began to doubt how many people would be in and out of the subdivision when just then one of Grouchy's high school buddies came by with his daughter and two other little girls in their off-road golf cart. They helped us get the table to the right spot and then bought lots of lemonade!!! Next, the neighbors whose yard we used came out and gave the kids $20!!!! After that the cars and neighbors kept flowing out, and we ran out of three pitchers of lemonade and cups, but most importantly, the girls raised $46.74!!!!!

I'm so proud of my girls, and Garrett too, of course. I thought they were just trying to make some cash, but then I saw they were doing it to raise funds for the Muscular Dystrophy Association!!! Wow, I need a heart like that!!!



Friday, August 13, 2010

Bedtime Story

Once upon a time, a buyer made an offer on a house. It was a low, low offer. Seller tried to bargain. Buyer walked away. Buyer came back again after a month with same low, low offer. This time the seller accepted. Buyer brought parents with him to inspection. Inspection was not bad....several items which could be addressed within a couple of days. Parents talked buyer out of buying the house. Moral of the story: Once you are an adult with your own spouse and family, it's mature to make your own decisions. But some people always need Mom and Dad to parent as long as Mom and Dad are around. Maybe Mom and Dad are footing some of the bill....hhhhmmm.
Of course, this story couldn't have happened to us in the past 36 hours....could it???
I will leave it to your imagination.
The End

On to other things besides our bedtime story:
Everything is a go so far for our homestead in Homedale, Idaho!!! YAAAAY!!!!!
Ous loan is all good to go, we got a good interest rate, and we are working with a super-nice guy in Homedale. We LOVE, LOVE, LOVE keeping our business dealings in our homestead town when possible. He gave us an good interest rate on a 15 year mortgage...GO DENNIS!!!!
Inspection had several things on it that inspector noted (much like the bedtime story), but knowing we were getting a GREAT price on the place (like the guy and his wife in the bedtime story) we only asked for a couple of things to be addressed, and they have already been done very quickly!! (Did I mention in the bedtime story that the sellers will have all the repairs to said house complete in a week even thought the buyer walked away today and canceled the contract without even asking for repairs or giving seller to address the items mentioned??) We already have a housekeeper lined up to clean the house and guest house in Idaho before we arrive and even LINE THE SHELVES in the kitchens for us (CLEAN, just like we plan to leave out house in LA when it sells!!!). The water test came back good. The realtor, Granny Birdlegs as she has asked my kids, her adopted grandkids, to call her, is so sweet. She is going to The Place Which Must Not Be Named (starts with Wal and ends with Mart) to get the shelving paper for us. We are so thankful for Granny Birdlegs!!! We can't wait to go horseback riding with her. God has already blessed us with such a cool person in our new town!! Movers come to get our things August 26 and 27, then we start driving...uuugggh....long drive....32 hours with animals and Grouchy.....but in separate vehicles. He gets the horses.....of course I get the two dogs, cat, and whatever goes along with that!! Between Grouchy's mom and other family, the kiddos will stay in LA another week or just less than a week and I will fly home and be the bad guy by wisking them away to the other corner of the universe. I know, it's all my fault. I am a bad daughter in law. I get it. And the message is being received SILENT AND CLEAR.

Well, there you have it, not just an update from us, but also a bedtime story. I cannot mention names or locations of the story as I have to protect the ignorant...I mean innocent. Did I just say that?? We will sign the cancellation papers tomorrow, relist the house at a reduced price and probably get more than this very low offer we had accepted. It's really off. Folks said they would not be picky on inspection repairs since were getting such a great deal, but then walked away. God and I have been chatting.....instead of just me ranting. I am trying to make up now. Actually, He is always there, but I pull away when I don't get my way. I am trying harder....daily Bible reading is back on track, devotional and prayer time is back in the morning and evening mix. Thanks for listening/reading while I have been in my pity slump. Funny how on a day like today when we have been completely shafted and our time wasted completely after we were more than reasonable to people, I feel things are looking up. Life is good. I am blessed. I love my husband and family, and I have the best friends a person could ever want!!!

Garrett has been to school three days now, or maybe four.....either way, he had a good week. He still will not go to sleep at naptime, so I pick him up at about 1:45. I also have to go to school each day at 11:45 to give him his noon mitochondrial cocktail until we get all the forms and labels and all right so the aides can administer the cocktail at school. Lots of hoop jumping here on that, but it will be okay. Our adopted college daughter, Laramie, will keep Garrett for us tomorrow and if, if, if, PLEASE the weather will cooperate, we will be joining Uncle Lee, Aunt Becca, Louis and Sophia for a day of boating on their new fish and ski!!!! We are so excited to be out on the water!!! I know Garrett would not enjoy it for long, so he will have fun taking Laramie to get her hair cut and get school supplies at Office Depot. He loves to chauffer his ladies around town.....especially when they let him play with their iPhones!!!

Godspeed and nite nite!!

Thursday, August 12, 2010

Speechless......not often!!!

I am speechless.......and it is a very, very rare occurrence in my earthly life.
I had dinner to say bye to some sweet, loving friends tonight...ones who can hear what I have to say and still think I am not completely nuts. Ones who loved me through scary times when Garrett was not doing well physically, and ones who listen now and love me through it all. It was relaxing, funny, somewhat hazardous, but overall FUN!!!!! Thank you GIRLS!!!
Moving date is approaching!!! We have movers lined up, plane tickets purchased for me to fly back to LA and get the kiddos, but still no date on when our things will arrive in Idaho. That would be good to how many air mattresses do we need to buy?
Grouchy is about halfway in his 14 days in Alaska. We all miss him.
Garrett finished his second day of school and loved it, of course. I have some homework to do to get his mito cocktail administered to him during school. Meanwhile, I will be driving to school at 11:45 each morning to give it, then home, then to get him at 2 to bring him home for his nap.
Time for sleep, or lately, more like rest!! Hoping my brain lets me sleep more tonight!! Lots to think about. Lots I worry about, so need to sign off an pray!!

Saturday, August 7, 2010

The Blue DSi Cover

Sometimes it is hard to describe the behavioral things we see with Garrett that are alarming. Here are a couple of examples from today:

Hair cut....We don't even darken the doors of a hair salon or barber shop anymore. Grouchy bought clippers to use on his hair, and we use them for Garrett. Most of the time I can plug my iPod onto a docking station with speakers and he can stim on changing the music enough to make it through the haircut (all of about 3 minutes) while intermittently screaming, but still enough for me to make an okay job of it. But today there was to be none of that. Our family friend and babysitter was here and helped me. It took both of us. Then he would break free from us and run away screaming at the top of his lungs and hit the brick wall of our house and then the door and then a chair with his hands and spit and tantrum. I would get him back to me and buzz a little more and it would happen again. And in case you are trying to think about ways to help the situation, NO, scissors are much, much worse and yes, these are the quietest clippers made. And yes, if we hold him down it can be faster, but he is really tall now, and we are trying to help him get over this. If I cut it once per week, he is's been 5 weeks since the last time.....shame on me....

New DSi cover......Bought Garrett a Nerf brand DSi cover to protect his gadget, but he has picked at it until one corner has no padding. The DSi is black, and the cover was bright blue and black. A couple of days ago I bought a new one for his DSi per Grouchy's request, and our babysitter put it on his game for him tonight. When he asked for his game he went nuts as he noted the new color of RED and black on the new case. I seriously thought that he would like the red or not really care. Apparently not. He launched it across the room and began the tantrum-ing.

Ranger.....We have a thing like a redneck golf cart called a Polaris Ranger. It's a 4-wheeler motor and tires but with a bench seat, larger body like a golf cart but bigger and with a steering wheel and gas and brake pedals. Garrett enjoyed being able to drive our friends' golf cart in Montana. It wasn't too fast, and he could reach everything as he was sitting/standing between our legs on the golf cart, so we could get control if need be. But the Ranger is much, much more powerful and faster, so him driving it all by himself with us as passengers isn't an option. So twice today he wanted to go ride it, but he had a hard time because I would not let him "drive it all by myself!!!!!!!!!!!!!!!!!!!!!!" So we rode a while, me pushing gas and brake, and Garrett steering, but he still got off so incredibly mad that it really didn't make anyone happy!!

Those may be easily explained away by some people...having a bad day, needed a nap, "typical boy," spoiled....but if that's what you think, you are wrong. We are scared of what these things are leading toward. I fear the future just looks more quirky.....and unpredictable. Will babysitters be an option much longer?? Can others tolerate these isms of his??? We can. Maybe we are what he will have.

In the past I wanted a crystal ball. I no longer want one, ever. Had I owned one before now and seen this, I might have given up. But because I didn't know this was the way it would be, I couldn't know to be scared or anxious about this. I had no earthly idea.

Ignorance is bliss.


Back to the Crib.....but not Garrett

SO it's back to the crib here!!! Garrett still sleeps in his crib. We cannot imagine allowing him to sleep any other way. He would wander, not sleep, pillage our town...

But for a few weeks in the early summer, he would ask me to "sleep with him." I figured out he meant for me to get into his bed and play at bedtime. I crawled in the first night keeping in mind one of my favorite books THE HORSE BOY, where the father crawled into his autistic son's bed and gained so much perspective of his son's world. So I tried it and figured if a father could fit into his crib with his three year old, then a female my size could surely fit into the crib with my 35 pound 5 year old, right?? It wasn't graceful, but it worked. And so we carried on with our little ritualistic crib time for a while, but then stopped one day. It must have been when Grouchy was still driving an hour and a half to work and we were always rushing to get into bed by 8:30. I remember feeling like if I was in the crib with Garrett, then Addie and Ainslee were likely not making bedtime progress while Grouchy was packing for work and trying to get to bed also. So I quit.

While in Montana, the Pack-N-Play didn't yield room for our snuggles!! But once home, I started our crib ritual again, and it has been so rewarding for me!!! He makes me play games with his stuffed animal monkey he calls Monk-Me has conversations with his Mickey Mouse my mom gave him. We then tickle, rub noses, kiss. And this is where I am teaching him to say "I love you" in response to our telling him the same instead of the response of "I don't love you too" we have been hearing the past year or so.

But last night was a little different. He was tired, really tired. And he put his head on my arm and I ended up with both of my hands around his precious, soft face. We talked a little.....or said a few things back and forth. He said "I love you" after I said it. And I rubbed his back and shoulders and he closed his eyes. He would open them a little sometimes in a drifting off to sleep way, then close them. He was so peaceful, so still. I began to think. I wondered what was going on in his mind. I wondered what the world looks like to him. I thought about the times I have raised my voice in frustration or anger....the times I have popped him on the leg for kicking, hitting, screaming, throwing things....
I wondered where he will go, what he will do, who he will have as friends, how he will get along in this sometimes very cruel world. I prayed for him. I prayed he would know we love him. I prayed for patience. I prayed for his health, peace, and that he will enjoy this life. I prayed for Grouchy to heal from the wounds of this world that doesn't have much tolerance for things outside the "norm," as we learned the hard way twice during our travels when people made their cruel, judgmental remarks regarding Garrett's behavior. Then I prayed God would take Garrett's soul even if Garrett can never make a decision regarding his own salvation. I believe God will do that.......but I have some serious doubts and issues with who God is and exactly how or what he cares about in this much is so incredible unfair. What's the point of creating beings to roam a place like this and endure suffering that we see.....not that ours is comparatively that bad. But I think of our dear friends who lost their child. Our friend at church whose daughter lost her newlywed husband years ago. My friends on the Parent 2 Parent board whose mito kids have already passed away. My friend Kim and her family as they watch Barett already breaking down under the cruel disease of Duchenne Muscular Dystrophy. What's the point????

I digressed, and not into a rosy topic, but I leave you with this.
Sometimes getting into the crib, getting on our kids' levels, just taking a time out and BEING THERE in that moment in time, can yield incredible bonding.
So take a moment with someone, somewhere in the next week. Get on their level. Might be a child, co-worker, elderly parent or stranger, even.
Listen. Feel. Love.

Oh, and I plan to spend time in the crib with Garrett every night as long as time allows.


Thursday, August 5, 2010

Rollin' Rollin' Rollin'

Almost literally!!!

Got the paperwork and evaluation and all in for Garrett to get his own RED Convaid Scout adaptive stroller. For you moms from the message boards, you will likely want to jump up and down for can be quite an ordeal, and our AMAZING equipment rep we have through the Muscular Dystrophy Association got it done lightening-fast!!! For those of you not knowing what I am talking about, it's a large stroller made to hold a larger kiddo....they come in different sizes. His will be a good size up to 70 pounds and has wonderful, air-filled, knobby tires that are great for everyday use, but especially good for our type excursions: state fair, parades, horse shows, rodeos, light hiking, etc. It's a heavy stroller, too, so has good posturing, h-harness for his safety and posture and very, very stable and safe. So in a couple of weeks, we will have another Scout, but one that fits Garrett and not have to share Addie's Scout. Addie's is blue, his will be red. I pray it arrives before we fly the kiddos to Idaho for the move. Garrett is too big for regular strollers, and he isn't safe to be walking around with us in airports and places where we cannot always pick him up (he hasn't gained weight in about two years, but he weighs 35 pounds and is getting waaaay to tall and active when mad to carry) when he takes off or tantrums.....which is very frequent these days. So he will be safely rollin'!

Second, we have a signed purchase agreement on our house in Louisiana with an August 27 closing. We also have an August 31 closing here in Baton Rouge for our Idaho house. Movers come to pick up our entire wagon load of stuff August 26-27. Once both houses are closed, Grouchy and I will race cross-country with two vehicles, two dogs, a cat, two or three horses, a Polaris Ranger (like a John Deere Gator) and two kid-size fourwheelers. We hope to beat the movers to Idaho.....we have to, really!! So might have to move Idaho closing to be a little sooner or maybe close both on the same head is rollin' now!!!

And then there's very good news from home in Alabama. My father's father, who has an inoperable malignent tumor, who looked close to the end a few weeks ago after radiation and chemo told his hospice ladies he didn't need them and felt so good he wanted to go run around the yard!!! They told him NO. But that's great to hear, no less!!!!!! He is 90. My mother's mom is 95 and had emergency surgery for a tumor similar to my grandfather's this week, and she scared everyone a couple of days ago as she began to bleed uncontrolably, but then now she has stabilized and is even I see maybe with relatives that tough, maybe God IS giving me a little genetic strength, too!!!! Praise be to God for these improvements. I ask for continued prayers for my two grandparents and my parents and family. So let's keep the prayers ROLLIN'!!!!!

Grouchy left for an Alaska trip for work, and we miss him!!! He made it safely to the North Slope where there is a "nales lady behind every tree." He says there are still no trees......

Addie and Ainslee are at dinner and a movie with Aunt Jen and cousins Chris and Sarah. YAY!! They need to get out more like that. Garrett stayed home with me and we napped and played. Time for dinner now.

Hope your day has been a positive one. Here, the many distractions of the move and all have been a good thing. Mom, you know I am always healthier when I have too much to do!!!! Keep ROLLIN'!!!!


Wednesday, August 4, 2010

A Good Day

Today was a good day........

We spent most of the day with the our dear friends by the pool.
Unfortunately, Grouchy left for two weeks for Alaska for work.
We started Garrett's new psych med weirdness beyond the normal so far. Contacted both of his neurologists, and both gave me the go ahead on the med, so maybe tomorrow will yield some calm.......
Got my PT friend to help me get things together to get Garrett's new adaptive stroller ordered. Hoping it will arrive before my mom is flying him to us when we move at the end of the month.
My Mom's mom, Buddy, is holding on a plateau after a large tumor and most of her large intestines and all of her colon were removed. She is 95. She began bleeding internally yesterday, and the doctors originally gave up on her recovery, but her small town doctor stood up for her and asked for more blood transfusion and time.....and so far Buddy isn't getting worse.....we keep praying!!!
I am now in bed with Addie and Ainslee. Rain is falling outside....aaaaahhhhh. Today was more normal than most days as of late. Garrett took a great nap, we had a wonderful time with our friends, and I look forward to getting our move behind us and getting back into normal mode.

Oh, small detail....we have a contract on our house without a contingency, plans to close the 27th of this month, we need to be out by the 30th, and we have the movers here on the 26th and 27th.....aaaahhhhh.. THANK YOU, GOD, for helping all of this fall into place!!!!!

Blessings to you and yours, and shout out to my sweet, new friend, Leigh, who has a son with similar probably dx of mitochondrial depletion syndrome.....really cool thing is we live about 15 minutes from each other!!! Looking forward to getting together!!!!


Tuesday, August 3, 2010

You know the behavior is bad when.....

You know your child's behavior is bad when you go to his annual pulmonology checkup and leave with a prescription for an antipsychotic medication.....for him, not me.....don't laugh because I am probably right behind Garrett on this one!!!!!

We were called back to the weighing and testing room on schedule today, and Garrett allowed the LPN to weigh him on a wheelchair scale (no cooperation for regular scale today, but some days this year he has let us put him on one) after 10 minutes of coaxing, allowed us to measure his height, and then no pulse-ox check, NO WAAAAAAY!!!!!! Also no chance whatsoever at any lung function tests....nope, nadda, go to hell nurse!!!!!!!

So we waited in the exam room for a half hour or so, a nurse came in to get his list of meds and ask some questions, and then more waiting. The pulmonologist came in and Garrett went into the best mix of ADHD, Autism and Sensory Integration Disorder I could ever imagine. Robin Williams couldn't have TOUCHED impersonating Garrett today!! It was wild. He was making these loud slams trying to open and close locked cabinets under the exam table while hitting me while screaming songs and random wacky words and phrases at the TOP OF HIS LUNGS over and over and over. It escalated as the doctor and I tried to talk, so the doctor (BRILLIANT, amazing guy!!!!) started aiming his attention toward Garrett, which helped a little. So the doctor says, "So Garrett, Garrett....GARRETT (and finally gets his attention). What are your other doctors doing about your autism, behavioral issues and all? This must be weighing heavily on your mommy and daddy and making it very hard for your sisters to get a word in or any attention in your house or family life."
I lost it. I began crying, lip shaking, sobbing, trying to thank this man for acknowleging the hell of our family dysfunction and trying to tell him NOTHING, NOTHING IS BEING DONE!!!!! I talked to our mito doc's nurse, and she said that the mito doctor doesn't address those issues, but they have people in the same practice in HOUSTON, A FOUR HOUR DRIVE WE CANNOT MAKE AGAIN WITH MY SON, who could see him. Our neurologist here can't see him until another couple of weeks. His pediatrician can't see him until August 25 for his 5 yr checkup, so NOTHING HAS BEEN DONE!! I have shared these issues with the other doctors before, but it takes a pulmonologist to get anywhere!!!!! At least we have him on our team!!! So he wrote a prescription for Risperidone, an antipsychotic med used on autistic kids and bipolar people and other things......I am emotionally exhausted and can't rememer the rest. Maybe the little voices will kick in soon and remind me.....standby......I will wait to hear back from an email I sent to the mito doctor's nurse to double check they are okay with this med before we begin. It will be given at night, and it can help, or it can cause things to get worse, which means it's not working. Grouchy said, "Seriously, it could get worse??? Is that possible??" Yes, Grouchy, if Garrett stops being able to sleep, it all gets worse....I will be in a straight jacket!!! I have to at least have some rest!!!

So there it is, oh, also learned Garrett's chest appears to the pulm. to be getting weaker, and his ribs are "downward slanting." That's a tiny detail compared to the behavioral issues. At least since he isn't sick now, it's a tiny seeming thing......praying for no pneumonia or flu, ever!! Don't want to take this little chest for a test run!!!

Love and blessings to you and yours. That's the main meat of the days. Notice I didn't mention anything about doing anything with Addie and Ainslee.....just didn't happen. I pray when the bus takes Garrett to his class on Wednesday, I get my time back with my girls. We live and breathe in the same house, same family, but I miss them terribly.

Oh, I think I am starting to get Garrett to say I LOVE YOU TOO, when we tell him I LOVE YOU. For about 6 months he has replied I DON'T LOVE YOU TOO and thought it was funny. It isn't funny. It hurts. I know it's a toddler saying something silly, but it's messing with our I am trying to teach him the correct response....Sometimes the little things grow into huge things.


Monday, August 2, 2010

It Happened Again

Couldn't share too much about this last night, but need to tonight just so I don't lose my mind.....YOU are my FREE therapy, thanks!!!

On a shuttle bus the night we were stranded in Denver on the way home from Montana because of United Airlines' mechanical problems, we were given voucers for two hotel rooms, transportation on a shuttle to the hotel and meal vouchers. We left Garrett's old stroller in Montana with our friends. We couldn't fit ourselves, stroller and luggage into the Impala, so we left the Bumbleride stroller for our friends to enjoy with their baby. BUT we forgot how hard it is to travel with Garrett without being able to restrain him in a stroller sometimes. Anyway, we sit on a curb area for abour fifteen minutes waiting on the bus, it arrives, and we load up. Garrett and Ainslee sit next to this sweet college girl from South Dakota, and Garrett gets kind of loud singing, banging his rhythm jam on the bus window with his MedicAlert ID bracelet and screams out a few times......perfectly normal for him, but not to the rest of the world. This guy two rows ahead of us turns about halfway around and says, "Could you please get your kid under control!!??" Oh my. We had experienced a crappy travel day, and Grouchy and I were at the very end of our ropes. I gasped out of horror of hearing another person make a comment about OUR CHILD, and I held my breath. I was pretty certain I was about to see Grouch LOSE HIS MIND on this guy. Again, in complete control (to my awe and respect of this amazing man God blessed me with) Grouchy says, "My son has autism. If you have something to say that might help us or him in some way, we would love to hear it. Otherwise, GOOD DAY." I am so proud of Grouchy. These comments from strangers are so incredibly painful. The stares bite. The looks's our CHILD, and he CANNOT HELP IT, neither can we. That's the worst. We know what it's like to travel and try to sleep on planes and want peace and quiet. We have both traveled extensively with our careers, and I am sure I have heard kids like mine and had some thoughts about the kids and parents, but I NEVER said anything, and I tried to help these parents out by talking to those kids, offering stickers from my briefcase, toys I might have tucked into my backpack from my kids....but NEVER was negative. I can't help wonder how these people think and feel after Oscar responds to him. I hope it prevents them from hurting another family.

This all hurts enough without criticism. These people have no clue what we would give to have our son respond to reprimand for screaming. They have no idea how hard every moment of the inappropriate behavior is to our hearts and souls. They have no idea what it is like to not have a normal relationship, a true RELATIONSHIP with my child.........

Maybe Grouch's calm, but firm explainations will reach their hearts and help them be easier on another family. Maybe that's why we crossed paths....who knows? There's question #1276 I plan to ask God in Heaven if He lets me in.....that's likely questionable this week!!!!

We enjoyed a family gathering at Grouchy's parents' home to celebrate Garrett's birthday since we were in Montana for the actual date. It was nice. Garrett was terrible on the25 minute drive there. Grouchy drove from a meeting, so since we were inseparate cars, he offered to take Garrett in his truck to get home, and I GLADLY accepted!! Addie and Ainslee enjoyed a quiet, fun ride home trading the bracelet Silly Bands they have. We put Garrett in his crib, and for the first time in over a month, I got into the crib with him and we pretended his two stuffed monkies were talking to each other. The lights were off and his laugh was the most beautiful, angelic sound I have ever heard.....almost made me forget about the abnormal things. He was simply an exhausted, giggly little boy.....normal. It may sound strange, but sometimes I miss Garrett. I miss the baby boy with tummy issues and delays that we thought would just "grow out of it and get right." I saw so many babies in the airport, and I felt sadness and lonliness for my baby boy, before we were this scared....when we feared he would not live long, but he was just simpler, a baby, no obvious issues if you didn't see his feeding tube or know that he was much older than he looked. As he looks closer to 4 years old even though he is 5, the world expects more from him than they did when he looked one or two. Society expects respect, quiet, normal reactions, patience.......

Going to bed knowing the house inspection is complete in Idaho, and while there are several items to address, the main structural aspects of the house and guest house are in great shape. The houses are only 4 years old and are in good condition. We will address some things with the sellers and hope they will cover them without contest.

Goodnight and hugs to you and yours. Tomorrow is a new day, a clean least for my reaction to my environment!!!!!!


Sunday, August 1, 2010

We are home in Louisiana, finally!!

Four hour drive with plans to overnight in hotel near airport in Spokane, WA the night before our flight home.........
instead, 3 hour drive, then Garrett so out of hand with behavior that we have to stop an hour before our arrival in Spokane...blessed with condo with indoor water park..THANK YOU LORD!!

Flight home yesterday with only one layover in Denver....
instead, initial flight delayed due to mechanical problems, so missed connection in Denver. Got voucers for two rooms and meals for all 5 of us and caught flight home today thru Houston.....THANK YOU LORD!!!

A man on our shuttle bus to the hotel last night asked us to "get our child under control" as Garrett was getting very loud late at night on the bus. I completely would have honored my husband if he had choked the guy to death, but he proudly and confidently said, "Mister, my son has Autism, and if you have something to say that will help him in some way, we would love to hear it. Otherwise, GOOD DAY!"
My heart broke from its current millions of pieces into a billion pieces.

Woke up at 4:30 this morning in Denver, flew to Houston then to New Orleans and then drove home. Took hour nap, then had to show the house....repeat showing with no realtors. Nice people. Had planned dinner with Kim and family, but she had to take Barett to ER because of brown urine and chest pain while at a kids' play place....was too much for him. Her hubby and girls came over for dinner. I took her dinner and chatted and told her bye......they move to south Texas tomorrow. Sigh.......

The past month has been an emotional whirlwind for our household....mainly Grouchy and me. I think we are mourning the life we imagined, the healthy kids we assumed we would have, the dreams for their futures. Garrett's behavioral issues are escalating. The three weeks Grouchy spent with us in Montana were eye opening. He has seen "it," the elephant in the room. Honestly, right now I rarely worry about how Garrett's life may be shortened due to Mitochondrial Disease because his behavior and autism and all is so overwhelming I cannot think of much else.

I am not the person I was a few years ago. I am not the fun, adventurous mom I was before. I I am not the physically affectionate and passionate wide I was. I am not the outgoing athlete I was when Garrett was a baby. Garrett's needs completely consume me. I don't mind being his mom, meeting his needs, but I do feel bitter I am not the mom I wanted to be and was in the past to Addie and Ainslee. I just have nothing to offer, no extra energy, no positive vibes right now. It's close to depression, but I pray that it is part of the mourning process I have read about and not depression. I am open to professional help but feel I need to sit tight, get the move done, then reassess once Garrett is back in school. Things just are not as they seemed they would be.

I pray thanksgivings every morning and during the day. Maybe all of the wonderful experiencees, travels, opportunities, an amazing marriage, were all dealt to me early in life because this was coming. SO I am thankful for these things, truly thankful. I am thankful my son is alive, I truly am. I do not have any way to predict the future with certainty, but after the past month with my household, I can almost promise it won't be near normal for Garrett and our family. It will have some beautiful moments, but overall, from where I see it tonight, it just won't be nearly what we had hoped for as a couple.....for ALL of our kids. We will have to have more sitters, help from my parents a few months per year, hopefully another great church family in Idaho.......we will have to leave Garrett back....but he would rather be home playing with the piano or battery powered ride-on 4-wheeler or tractor. But it still's so disconnected, so NOT us.

Ho hum, I know sounds whiny. Maybe it is, but it is the truth.

Kim gave me an adorable little sign as a going away gift. It says:
Life is about how you handle PLAN B!
Wow, that sums it up!!!!!! I really wish I could just walk away from PLAN B and go try Plan A again. That was me.....workable, somewhat predictable, fun, energetic, outdoorsy, etc.

Sorry if I drug you down with me. We will make it. We have to!! We have little people depending on us!! Thank you for sticking this one out......promise it will get happier!!!