Saturday, September 29, 2012

One Hour Boy...slightly heavy topic, be warned.

One hour. That's it. No more. Not one second........

Today we went on an adventure. Garrett's personal care/developmental therapist hopped in our car today and went with us on an adventure she came up with for Garrett. We dropped Addie off at a dance workshop on the first leg of the trip, then the caregiver, RaeAnn, Ainslee and I went to the Julia Davis Park near Boise State University for the Museum Comes to Life day. It is a wonderful event with music, FOOD, people dressed in period costumed from all eras of history, and museum buildings that are only open this one day per year. RaeAnn had brought a newspaper to Garrett that described the upcoming event, and there was a great photo of two knights sword fighting on the front page of the paper. She talked it over with him for the past week, and he said he wanted to "go see the knights!" We parked near the area right where the knights and queen and such had set up camp. He liked looking at the knights but stood almost behind us and peeked at them when they had sword fights. He had brought a couple of small knights the size of the little plastic army men that I had around as a kid. No, I was never a girly-girl until I was a rodeo queen, but even then...sorry, resolve not to digress. Garrett carried his tiny knights around and ate some kettle corn, but then the one hour mark came and he was D-O-N-E. And I mean done!!! And it was exactly at the one hour mark. I had noticed this trend last weekend or maybe the week before when we had to go to a local ranch for a function where the girls were camping with horses near the creek, and even with lots of open space, clean, beautiful, WET creek and his own lunchbox filled with his toys, one hour was it. Then later that same day at another function, again, just an hour. NOT ONE SECOND LONGER.

Looks like another phase, stage, something. One single hour. He had his personal caregiver RaeAnn, whom he adores, but would not leave my side. Ainslee and I could have left them there for another couple hours while I ran to get Addie after a dance clinic and then took her to shop for tights and dance shoes and then picked Grouchy up from the airport. But nope, he had to be with me, and so his caregiver had to tag along, and then he was still noisy in the car, melted down at the museum deal, and really, it was quite an aggravating experience.  It seemed logical I could go to this museum thing outdoors with all these kids activities, leave for a bit, return to get them....but nope!! And truly I have to be careful if I leave him with RaeAnn and he pitches a fit since I sincerely believe someone might think she was kidnapping him if he has one of his loud, out of control fits he has sometimes had lately when I leave. Out of the blue....BAM!!! But a year ago this could have worked. We are not going forward here!!! Note: I am still glad we went and RaeAnn was very delighted to share the knights with Garrett, and I am so blessed by her!!

You know, in some ways, Garrett is getting better...... at some things, but not necessarily and not really in areas that help him work within the normal boundaries of other people and events. But then days like this, and when I realize things like the one hour deal, I realize how restricting this is. A year ago, you could have stayed all day with him in a huge outdoor park with all that activity and space to roam and all, but now it is one hour, no more. Shoot, we never made it to see music or dancing. Yes, I had to go get Addie, but Garrett COULD HAVE stayed with RaeAnn at the park and had other kids.......??? And we could have come back and maybe stayed longer so my girls had a chance to enjoy it. But nope. Not in the cards. So here we are in that family of two sides.....stuff we take Garrett to for one hour and for no one else to enjoy, or leave him behind with a caregiver and we get to go without him. Grrrr.

This mental stuff is really, really tough. RaeAnn is wonderful with Garrett. But then she worked the psych ward of a hospital, has worked at nursing homes, and more. So she is okay with crazy. And I mean that in a loving way toward her and my son. But for me, crazy is exhausting. Give me an ADHD kid, someone with a big mouth, a hyper kid, a "slow" kid......but when things just don't make sense and there is constant NOISE and nothing I can seem to do to ever make it better. It is insanity. I go back to that place today when I told my mom over the phone, through my huge tears, that Garrett had to be retarded because things he was doing were so, so, so insane. Literally crazy. I told Grouchy the same in a frustrated rant one day. And the psychologist confirmed it a month or so later. I was right. Mental illness, retardation. It is nutty. It doesn't make sense. It is exhausting.

Most people are nothing but encouraging and uplifting when it comes to their experiences with Garrett. A friend was just here last night who is a nurse and tried a bathroom toilet training "trick" of trying to coax Garrett to poop on the potty so he could ring a bell we have. She was so sweet and kind to "try what worked on her kid." I didn't have the heart to tell her she might as well speed up the clock and waste more of her life trying stuff like that. Doesn't work. Most of you who know Garrett see wonderful. Of if I were able to trade places and only see Garrett at church, in school, etc. I see it too, daily, I truly do. But I also have this very dark place in my heart where my mind, it doesn't wander. Maybe it lives in the dark place but comes out more and more. It's weird. I am stuck. Garrett doesn't know, at least.  But then he is such a blessing, and I try so hard every day not to take Garrett for granted. He is sweet and funny. It isn't all bad. He is an angel.....for an hour!!! HA!

A month ago Addie, Ainslee and I flew to Louisiana to meet up with Grouch for our soybean harvest. I drove a combine until the hurricane came and on a couple of days after. I will never, ever forget coming home to my parents here in the bunkhouse who had Garrett for 3 weeks. He started school while I was away, so there was some relief, but still, it was 3 weeks!!! They had a nice time with him, but my sweet mom shared her experience with Garrett the day I left as "eye-opening." Apparently, Garrett had many off moments a couple of times that first day, and through some welling-up of tears, my mom shared that she "got it" more than ever. She saw, lived, and felt the insanity, the helplessness, and just for a fraction of a fraction of a second (my mom is the most optimistic person you could know!!!!), the hopelessness. She would be the LAST PERSON to ever lose HOPE in Garrett, but he took her to the place I am trying to describe, and once she had been there, Mom and I could communicate even better regarding my feelings and dashed hopes and my still-somewhat-strong wishes. She followed that with a couple other optimism pep talks over her last month here, but still, having been to the depths of this reality was helpful for Mom and me to team up on this even more.

Then Mom said something profound another time. While I look at Garrett as parts or moments good or bad or amazing, Mom can step back and see the whole picture. She has been by my side since day one, able to listen, encourage me, help with Garrett. It was an emotional moment for us both, I think, but she said, "It is this DISEASE!!! I can still look back and remember that precious, happiest baby I had ever known. He was not headed this direction in any way at all. Then this disease took him from us. It changed him. It has messed with his little brain and body, and it is terrible and unfair and.......Mito has taken him from us!!!" And I think she had to stop there. And while I try to separate Mito from Garrett and even some days hope it is all going to just get better or resolve, HELLO, he is seven, diapers at night, wetting his clothes almost daily, soaking through nighttime diapers needing linens changed on his bed daily, has some freaky ticks and habits, has major sensory issues, is pretty unpredictable,not able to be left alone, no bowel control, and very, very needy emotionally, on 22 doses of meds and supplements per day, and is a mental moving target. She is right. Mito has taken our child. While his little spirit, no, his AMAZINGLY LARGE SPIRIT resides in our home, in his tiny body, he isn't the sweet, happy, easy baby he was. He did change, a lot, from who he was before this disease took so much of him.

I have written before about my strong desire to sit on God's knee and ask him all sorts of questions when I get to be with Him. But I think I am past that. The insanity of Garrett has erased my desire to ask why. Sometimes I think I know lots of reasons why.

I have written before about how I want to punch God in the nose and scream at him, "HOW COULD YOU DO THIS TO ANYONE, ESPECIALLY MY SON AND OUR FAMILY!?!?!?!?" But I have gotten past that also.

Tonight I long to just crawl into God's lap, put my head against His chest and take a grasp of His robe into my hand and bring it to my cheek, close my eyes, and rest. Rest in Him. I am thankful He is there. Without that hope and confidence, this would be unbearable.


1 comment:

  1. O CL, I just pray......that is all there is sometimes. And I love you all!