Tuesday, April 3, 2012

Crashed My Fluffy Post!!!

So.....yeah......that last post that was all cheery and optimistic.....the one about God Himself shining through my son?????Well, apparently the wrath of Satan was unleashed on us all tonight!!!

Ainslee had gymnastics and Garrett was able to stay home with his developmental therapist ( I LOVE YOU SHELBY!!! ), so Addie and I dropped Ainslee off for her 2 hour class and then hit the YMCA for a workout together. It was so much fun!! And by the way, I have not EVER weighed as much as I do now.......except well into a pregnancy. So working out has to come back into my life.......and not eating like an idiot would be a good idea too!!! We came home to find Garrett doing great and so I left for a few minutes to run a quick errand down the street, very nearby, with the girls in charge of Garrett. In the 12-15 minutes I was gone, Garrett had a nice size poop and pee......in his pants and on the floor of the school/office/play room upstairs. I get home to my precious Addie cleaning the carpet. Love that kid. Of course by then Ainslee was 25 minutes into her 35 minutes shower....another whole post!! I take over the scrubbing and the girls begin to get dinner ready....leftovers. Addie had a diaper on Garrett so that was good.....until Ainslee yells "M-O-M!!!!! Garrett has poop running down BOTH LEGS!!!!!" I had JUST gone downstairs after finishing cleaning the first round when there he is back upstairs, poop everywhere flowing like a waterfall out of his diaper, down legs, between toes, and then oozing onto the carpet!!! For his personal care worker, RaeAnn, he had pooped on the potty a couple times, but she has him sit every hour. But it works for her!! Not for me!! Not sure if RaeAnn has magical timing or the poop comes on so quickly that he cannot even begin to go toward the bathroom.

So now there's poop on his jammies, the stairs from me carrying him down, and the carpet upstairs. Did I mention this same thing happened last week? THREE HUGE puddles of poop on the same poor carpet! And I thought my dog occasionally peeing in the house was a huge carpet-killer.......WRONG!!!!!

I cleaned him up and had to almost pray about the decision to either trash the PJ shorts or clean them. I washed them. I put Garrett in the bath for what I call a "business bath," which means all business, get in, scrub,get out!! Then he said, "Mom, my pee pee almost came out in the bath", so I try to get him to sit on the potty. He protests but I assure him he will sit. He kicked and screamed and pitched a huge fit saying he didn't need to, but while he was flailing on the potty, he started peeing on the seat and the floor. I very calmly told him to please sit still and finish but he pitched an even LARGER fit screaming that he didn't have to. I knew he did, so I sat on the bathroom floor, removed anything he would grab and throw, and just sat and stared into space. He was snorting snot all over the place, crying and all, but I KNEW he had more pee and that I had to stick with it. He finally did pee more and was allowed off of the toilet. WHEW!!!!

At this point it had been an hour to an hour and a half of this pee and poop cleanup so I blew off homeschool read aloud books, sent the girls to bed and took care of the outdoor animal chores in the dark, alone. I just wanted to sit outside tonight on the porch of the barn and just cry. I just needed to be in the hole for a while, in reality of the struggle of life and the unexplainable stuff going on in Garrett's mind and body. But I couldn't cry. It was beautiful outside, peaceful. The kiddos were all asleep. The cats were running all over the place on the hay bales and I could hear the cows and horses chomping on their grain and hay. And this is why, Grouchy, I stay up late!!!! It is a peace I can find nowhere else in my life these past years. It's the beautiful nighttime when all of the peaceful hours lie ahead. Make sense???

Meanwhile, I haven't mentioned yet, but I sent the blood in for Garrett's Mitochondrial DNA sequencing by Transgenomic. Should it yield a Mito-causing gene identification, Garrett may someday soon be allowed into the EPI-743 drug trial, but the hurdle now is to see if insurance will cover the $17,000 test. I am praying!!!

So there's the not so happy ending to the day that earlier seemed quite okay. It's still okay. And after talking to my dear Southern friend Kim whose son Garrett's age has Duchenne Muscular Dystrophy, we agree that we have to focus on the here and now and not lose sight of how short earthly life is. Oh, and I just did the math to realize that when the mito doc said kiddos living past three years of age with mito DNA depletion CAN make it into their third decade of life, though he cannot guarantee it will be pretty at that point, that the third decade of life begins at the age 20.........not at 30 as my ears wanted so badly to hear back at the appointment in Seattle!!! Oh well, God be with us and all families with children who face health challenges!!!



  1. What can I say other than to offer you a big squeeze? I'm sorry for your tough day...

    Your barn porch sounds amazing. I love our back deck in the summer moonlight, overlooking the pasture and stars after everyone is tucked in bed. We mamas need these wonderful retreats where we can catch our breath and just get alone with the Lord.

    Hang in there. And if you haven't discovered Nature's Miracle, please give it a try. We had years where we bought it by the gallon from the pet store for our carpet accidents. Great stuff!!!

    Big hugs,

  2. (((hugs))) I know what you mean about the peace when they are all asleep.

    Love Sophie (purplenose on the ivillage hypotonia board)