Saturday, May 26, 2012

Garrett Update and Mommy's Emotional Ramblings

Tonight I plan to blog two different topics. First will be the most important: How's my little buddy Garrett doing? Second, I need to share some things that have been weighing on me. I will warn that if you do not want to hear raw truth from the most sincere, somewhat troubled heart, don't read the second part!!!! I do not intend to drag anyone down, but there are some goings-on lately that I would like to address.

Okay, the really cool part, Garrett!
Our little guy has been doing some really super-cool things lately!! First, he graduated from Kindergarten last Tuesday! He will remain in the same special day class next year and can stay there through 5th grade, but Tuesday he got to go one stage with the elementary school's regular kindergarten classes, sing a musical with them, and get his diploma. He would NOT wear his graduation hat. Just wasn't going to happen, no matter what!!!!
Next, I have to gloat over how he is writing his name again!!! Over two years ago, he was writing his name, then the skill went out the window. Now it is back!!! He is also drawing faces on his magnadoodle board.
Just this past week he got a box of preschool-size Legos out of the toy closet and really latched onto the concept of looking at the instruction/example booklet and building things from seeing them on paper. I am THRILLED to see this type of skill from our little guy!
Oh, and can I tell you how EXCITED I am to report his latest potty skill??? Well, I can and I will, now!
He is wearing underwear almost every day, all day. But wen he has to have a bowel movement, he usually goes in his underwear....or worse. I will try to catch him trying not to poop, then put a diaper or pullup on him. And he gets aggravated in the biggest way. Lately, thanks largely to RaeAnn, his personal care person, has been staying after Garrett to drink his chocolate soy milk with the Miralax in it, and this is getting him more regulated. We increased the dose to 15-% regular adult dose, and it seems to keep him moving almost daily. We have switched out of diapers completely this past week, and Medicaid is covering his pullups....THANK YOU!!!!! He will use the pullups while asleep or when having to poop. Two days ago when we got the new pullups in, Garrett had been inside while I was out at the barn for a bit. When I came back to the house, Garrett said he had poop, and I could feel my heart sink thinking that he had messed in his shorts. But when I checked, he had a pullup on, and I had not put it on! He had felt the poop coming on, and he had gone and changed from pants and underwear into a pullup and shorts. I started calling most of the people I know to tell them about it. I was soooooo excited!! So today I was cooking  and Garrett slides over to me and says he is going to put on a pullup. No joke, he had the pullup on his precious, scrawny body in under a minute, but wait, that's not all! ABout 15 seconds after Garrett in his pullup walked back into the kitchen to show me how he had it on, he filled it up with poop!!!! THIS IS HUGE that he is feeling it happening and is willing to take charge!! I am so proud of him.
His vocabulary and conversation are booming!!! He is so chatty and will use words that surprise me.
He is getting more patient in a couple of areas and finally able to talk about patience a little. I can see the wheels turning!
His sleep study results should be back by June 13 for our follow-up appointment.
Oh, and Garrett got onto Addie's horse Big Red one day in front of me with no saddle and rode about 30 minutes. He usually shows no interest in animals, but he rode with me and we laughed, and is was one of my most fond memories to date!
He has started getting a plastic cup out of the kids' plate/cup/bowl drawer, filling it with water from the fridge  door, drinking it, and then pouring any extra in the sink and then rinsing out his cup and placing it back into the drawer. That's cool!
He has started doing better staying with me in public. It is still a challenge with every outing, but there is improvement.\\
AND HE IS STARTING TO READ!!! He can sound out some 3-letter words. HUGE!!!!

Now the things that are maybe going downhill:
He cannot for the life of him deal with BUGS.....sees one and is haunted for hours!! Shelby, his developmental therapist, is working on this, but it's sooooo aggravating! It's almost summer!!!!

We usually don't buy kids meals for fast food, but when we do, he cannot deal with the fact he got a toy with the meal but didn't ask for it. He wants me to "take it back and tell them I didn't order the toy!!!

He still has trouble about 30% of the time with yes and no answers. He switches back and forth. He also has trouble with making a decision and sticking with it. He is asked if he wants the cookie I have in my hand. He says no, but when I take a bite, he loses his mind.



Now onto my brain ramblings.
The other day I posted a photo of Garrett online, and a lady commented about how time flies and next thing I know he will be 40. It was so hard not to comment back that I will blink and he will probably be in Heaven about 20 years when he should be turning 40. It's haunting. And while I know this person did not intend to insult or upset me, it did strike a nerve. I let it go until I got a text from a close friend after she read it. She was fired up!!!

I have another friend who is such an angel. Her child is friends with one of my children. I love this friend and I appreciate her, but she has this complaining thing going on. I will be in poop to my elbows, trying to cool dinner, on the phone with Grouchy who lives in Louisiana planting beans for now, and I have to hear about this lady's "exhaustion, tiredness, and worry." It's all relative, I know, but seriously....raising one child, working, hhhmmm. I know it is relative, I know, I know. But I am knocked to the floor when I see her complain, which leads me to the next topic.

Whining moms. Don't get me wrong. I was more of a complainer until the health issues of Garrett's surfaced. Boy has God whipped me into shape. When I was at kindergarten graduation last week, I kept seeing moms grumping at their kid for walking too slow, fact, fussing over little girl's hair. And the kids were so darn cute!!! And then there was Garrett in his nice outfit on stage moving in weird ways to the musical music and not singing a single note, although he knew all the music. He turns his head to the side and bobs it strangely and even flaps his hands. He looked so obviously "special." And I stood there filming the event while my heart was being ripped to shreds. Don't beat your kids, yell at them, abuse them, get all freaked out about a misplaced hair bow. I guess I know I would trade sooooo much to have Garret to be average or normal. SO if you have a normal kiddo, love him or her, and never, ever, ever take a day for granted. It's so painful to walk this path with this sweet little boy and know his life won't be long and that he cannot understand or deal with this world very easily as most do, and to see so many people taking their healthy kiddos and their simple lives for granted. Don't get me wrong, I would never wish bad on anyone, but I do wish that some of these parents could walk in my shoes for one day and then change their perspective. Yes, I took my kiddos for granted before now!!!

I have more to say, but my eyes are crossing and I have a bug day tomorrow and it is Grouchy's birthday but he isn't home that day. Serious bummer!!

Godspeed!
CL

6 comments:

  1. CL!!!!! How exciting!!!! I'm so proud of Garrett.....and y'all!!!! And yes, I do mean to use that many exclamation points! :)

    As for the whiners.....that's my pet peeve! I was at fault for this pre-Asa but no more!!! Each day is a gift!!!

    Love y'all and keep up the good work!

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  2. How blessed I am to have a friend like Garrett! I hope he hasn't already outgrown his willingness to take off with me for some summertime adventures that only he could plan for us. We swim rivers, climb, play the machines (not the money ones - the fun ones!), shop-til-we-drop, don't mind getting lost occasionally (don't tell Daddy-O!), and meet some really neat folks along the way. We even have a new Magic Carpet this year! Let's Get Started, JG!!!!! Nina

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  3. Great to see the good news about Garrett, its definitely all about being thankful for every single accomplishment and milestone!
    Praise God we have been taught such valuable lessons through our mito kids, don't take anthing for granted! And count it all joy when our HEALTHY children mess up, praise God they are CAPABLE of even doing anything that's messable! :-) Abigail would love to be able to simply walk, let alone get in trouble for being naughty. I smile just thinking about it.... how wonderful if Abigail could do something wrong! LOL
    yes, I get SAD when others complain or whine about their lives... I have a terminally ill daughter.... if only I had a normal life! But its all relative and I know if it weren't for Abigail I would be whining and complaining about how HORRIBLE my life is. Sad that we have to watch our babies suffer before we learn these lessons of love, joy, and acceptance.
    Sorry so long...

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  4. I can envision Garret as I read about all the amazing things he is doing....such a cutie, and really such a gift in so many ways.
    And yes...I know your pain....all too well....as one who has had more to deal with than most....so, trust me....my tolerance for whiners over things that seem so trivial in comparison...my patience runs thin. Although I try not to compare my pain to others pain

    Hope you are enjoying your weekend my friend! xoxo

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  5. awww, wish I could of seen him all dressed up and in his best. I do know what that feels like :/ Although we all know our kiddos are different and are struggling in their own way, watching parents with "typical" kiddos complain is tough for me a well. One day in our shoes, yep that would do it.

    So good to hear he is gaining new skills, and getting ones back, that is huge! hugs to your babies tomight for me--

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  6. I work with Garrett at school and I am telling you he is the most awesome kid even on his bad days. I have been so blessed to work with him and to see his communication blossoming everyday in our sessions. Garrett may not be the same as some other kids but I see him as more than normal- I see him as "gifted" in so many ways other kids are not. You are right that adults sweat the small trivial things in live and take what they have for granted. They also very often do not see how truely special the "special" kids are. These kids require to ensure they have they are safe, loved and have the best quality of life they deserve. People are aften unaware of how draining this can be for their parents. Just remember though that those of us who work with Garrett and with you do know and are here to support you. As more people are touched by "special" people of all ages or kinds, I hope is that they will gain sincitivity, grace, and an understanding of how truly special life is. Dru Miller

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