Sunday, September 30, 2012

BEAUTIFUL Surprise!!!

After a beautiful day spent together as a family, we had the most amazing surprise!! Remember Shelby who had worked as Garrett's developmental therapist (and a dear friend of our family's)?? She moved four hours east for her senior year of high school, and we have Skyped her lots and talked to her, but not seen her since. She MADE ME cry when she surprised us by coming by with some donuts (DONUTS, Andrea's donuts......almost a spiritual experience!! A whole post would not be enough to devote to their deliciousness!!)! We had no idea she was in town. She saw Garrett and started to cry. Then I started to cry, and Garrett looked up at all of us and hid behind Addie's legs and tried to figure it out! Then he played and played with Shelby and Addie and Ainslee indoors and outside. It was a beautiful evening. And I took photos, but my memory card isn't letting me use them!! Such a wonderful way to end the weekend. Shelby plans to have lunch with Garrett at school!!! Wow, we love Shelby and miss her so much!!!

Saturday, September 29, 2012

Faithful Friend

Ernie and Ainslee, playing........

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.


Friday, September 28, 2012

Garrett's Mito DNA Sequencing Happening RIGHT NOW!!!

That's right!! I received a voicemail earlier this week that Garrett's sequencing had to be restarted because there was not enough genetic material in the first blood sample they prepared, but no worries. They went back to the sample and got more genetic material, and while it did slow the process down, we should have results by mid-November! I am thrilled at the news. Best case is we learn that a DISEASE CAUSING, NAMED gene is identified, thus Garrett's chances of getting into EPI 732 drug trial is better. Here is a link to the latest research study withEPI743:

Worst case is there is no abnormality discovered OR that there is one but not on a named place OR that there is a little something off, but the geneticists do not think it is the disease-causing problem.

I am really pretty uneducated about genetics and this particular study, but I know enough to be dangerous AND to know that an identified gene gives our little man a much great chance to get onto a medicine that is stopping and sometimes REVERSING mito in some kiddos.

I will post as soon as I have more info. I posted this earlier this year, but Garrett's mito doctor in Seattle thinks that if Garrett can get onto EPI 743, since he is more mildly affected than kiddos who have been in the end of life mercy trials and seen ENORMOUS results, we may see wonderful things for Garrett on the drug.

Let's just keep praying!!!
Godspeed and thanks to each of you for your care and concern!!

Monday, September 17, 2012

Surprise Macaroni and Other Deep Ponderings/Wanderings

A few days ago I opened the fridge in that pre-lunch-wonder-what-we're-going-to-eat search and noticed a box of macaroni, not the plain kind but a longer, straight, smooth noodle that looked yummy enough. I did not remember buying it, but with my parents in the bunkhouse for the summer and a caregiver in the home almost daily, I was sure it was just some community macaroni someone put in the fridge to save from the mice who LOVE my cozy home! I grabbed the box, opened it, and poured most of the dry noodles into a pan. I was walking to the sink to add water when I noticed a foreign object in the macaroni. It was brown, not at all the beautiful, clean color of noodles. I shook the pan and noticed it was long, brown, and well, somewhat "involved" in the noodles! My mind was still trying to process the object, and once I realized it wasn't a living thing slithering in the pan, I picked it up. To my surprise and complete confusion, I pull up a brown piece of string with many macaroni noodles STRUNG into a necklace! Wow, was I confused then. The remaining noodles appeared clean, so I proceeded with the cooking and walked the surprise jewelry find over to the bunkhouse to ask Mom what she knew about it. I showed it to her, and she started laughing, and I mean LAUGHING HARD! Then once she got control of her laughter, she told me she had purchased the noodles for Garrett to make necklaces and such, and she thought the fridge was the best place to store the opened box. Well, then I got tickled and Mom and I had one of those good laughs we have enjoyed so many times over our years together.

Next day, Mom mentioned how the necklace in the box carried some meaning, maybe a blog theme even. And it does. I have thought about it a few times, but not had a chance to collect my thought or the message that I got from it. But I am in an airport for an hour or so layover and have a few minutes, so here goes! The necklace finding is so central to the life I live right now with my Garrett. I am the box of macaroni, not really in the right place, but safe for now, at least. Like my earthly being, heaven being home, but the earth being a passage, a journey, a room, if you will. I am out of my element but placed by God into a safe existence. Box of the ice box. Inside of my life resides my soul that is completely wrapped around this little person that is Garrett. Beautiful, sweet, complicated, mysterious, and sometimes also very out of place! Necklace of noodles in the box. But in my box of macaroni is this beautiful little Garrett who is the macaroni on the string. In the midst of plain noodles is this necklace, this very well-planned, organized being that God created in His image and with His plans in mind. I have to admit that this is hard to write. I honestly feel the desire to vent about the last couple days' frustrating times with Garrett as some things are out of control with him as this disease ravages his mind mostly, but here again is the necklace. Just as the necklace was a total surprise to me, so is the plan God has for Garrett to effect so many people and to turn my hard, cold, judgmental heart back over to the One who sees the whole picture. And as I pour through the noodles of experiences and opportunities in my life, when Garrett comes to mind, I see more clearly the beautiful design, the love he shares with me, and the planned placement of the beautiful child. Aside from my weird analogy that I am pretty sure Mom did not have in mind, I also think of the humor of it all. Sometimes we have the chance to learn the neatest things about someone else, see beauty we might have missed, and even build a relationship with another human who needs us......if we take a minute to shuffle through the daily plain noodles and ask to see more in the world!

Off to catch a flight! Missing my home and my kiddos and Nina and Pop, but so excited to spend two nights with Grouchy in the big city for some business meetings.

Blessings, and may your macaroni hold surprise string necklaces and NOT bugs!!!

Monday, September 10, 2012

Silver Lining

Photo by Shelby....we love you, Shelby!!

Yesterday was an "off" day for Garrett. He was off, not his happy self most of the day, louder...than normal....., completely losing his sanity when asked to use the toilet, etc. At bedtime after a crazy haircut experience that I somehow thought was a good idea before his bath, we finished getting ready to get in bed, but as I pulled the covers back on his bed, I was met with a surprise: POOP. Under the sheets, on the blanket, mattress pad.......dried and smeared and nicely rubbed well into the fabrics. He had snuck to his room, taken off a pull-up and changed into his underwear and I guess sat on the bed and then scooted his stinky bum all over the bed, then pulled the sheets back up. Nice. I was in tears, truly was. I have only told him not to take pull-ups or diapers off 200 times, but we have realized it takes over 500 times for instructions like that to sink in. Seriously!! So we have 300 left! I had him sit in the floor of his room while I stripped the bed, using the last hair of sanity and patience and ENERGY I had remaining. But as I changed the bed, he started to sing....and while he sings lots, this was special. He started singing his kids church and Bible school songs, and not just any songs, but ones where he would sing a line and then say "WEPEAT, MOMMY!" And I had to wepeat!! So through poop smell, hours of a long day with a mentally frustrated kiddo and an already nutty me, there I was singing along as my son led worship in the midst of what I was going to let be a negative, frustrated time.

"He is God,
The one true God.
There's no doubt.
I'm gonna shout it out!!"

God is good all the time, right where I am, and the more I listen and slow down my mind, the more He shares Himself with me. I thank God for Garrett. He has more to offer this fallen world than I ever will!!!