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This is a picture of Ethan on the first day of school. He’s quite the handsome man, in his shorts and new t-shirt, all geared up in his chair and waiting for the bus. He has a great new mop chop (haircut) and he’s looking pretty spiffy.

Ethan has done great in school so far this year. I am elated with his progress and with the efforts from his team and all the work that goes in to helping him be successful.

At the Parents of children who are Deaf and Blind’s Annual Conference this year, we were lucky to receive a book as part of the tokens given to each set of parents. It is called, “In Jesse’s Shoes”, and it is a beautifully illustrated children’s book that is written by a sister of a child with a different ability.

I was touched by the beautiful message this sends to kids about bullying, about children that are different and how if we could really “walk” in other people’s shoes, our eyes would be opened in a way, that I don’t think we can pretend to understand.

I believe it is in our nature, to be empathetic and sympathetic. I think we work really hard to be generous and kind. I truly believe that most people strive, to do their best. This story is innocently written about a walk that a sister literally took, wearing her brother’s shoes.

After reading the book, we decided that a great place for this one to reside would be in our son’s elementary school library. So we donated it, with the hopes that when children come across this story, it might help with the conversation that all parents should have with their children (often) about others that are different.

I was incredibly touched this last week, when I went to volunteer in Ethan’s classroom, that our school Librarian had selected this book as the weekly reader. Meaning, that each class would get it read to them during library time. From Kindergarten to Fifth grade. It did my heart a good turn to see the efforts that the staff has put forth to help everyone included.

Ethan isn’t a student who will ever know, teasing. He won’t hear taunts and jabs, or be aware of other folks staring at him or whispering about him. We’re lucky in that regard, because Ethan’s spirit is protected from the knowledge of such things.

Other’s are not so lucky. I am so proud of the changes taking place across the world. I am excited to see awareness posters and disability billboards outreaching to others to promote acceptance and community spirit towards those individuals who are so different from us. I love it.

I think one of the most amazing things about us as humans, is the power we have to change our nature. We can arm ourselves with information, knowledge, understanding and awareness to help change our innate response to things we are uncertain about. What a gift our Heavenly Father has given us. What incredible opportunities we have to allow ourselves to grow past the hesitancy and reluctance that we might feel, when in a position of meeting some one who is disabled, or differently abled.

As a parent, this hope is manna. Sustenance.

Character cannot be developed in ease and quiet. Only through experience of trial and suffering can the soul be strengthened, ambition inspired, and success achieved. Helen Keller

In one of the darkest time periods in my entire life, when there didn’t seem to be much hope at all, and life was a very depressing shade of gray, I was offered a trip, to paradise.

I was a little slow to accept. I wasn’t sure I could manage it. All hope was gone, and I couldn’t find a crayon, let alone glasses to see colors and shades I’ve never stumbled across. A hand reached out to me, and grabbed mine, and said “lets, go.”

And so I cautiously, very tentatively left my dreary world, and headed to the summery paradise. Kooshton is one amazing place. In its lush green forests, beautiful rushing waterfalls, and tide pools. The paths were ones not yet traveled, and I was totally bemused with its glorious splendor.

The ocean waters glittered golden, as the sun made it’s beautiful evening decent and I witnessed the most glorious twilight sweep across the water. I swam in Kooshton’s Cove, and spotted dolphins arching over the waves, in their frolicking play, as I splashed in the salty tropical surf.

Just as the days were beautiful, the nights were amazing. Star lit dark velvety sky that sparkled and glittered with a million faucets. One evening we were given an incredible view of the harvest moon, that was so full and so close, I tried to reach out and touch it.

As beautiful as Kooshton is, it’s not nearly as spectacular as the one, I was sharing it with. Long talks, deep into the night, watching the suns decent and the awaking dawn together. Laughing and giggling at times, and others, just taking in the vistas and views. Comfortable, warm, conversations that meant the world to me.

I am so grateful, I took that hand that extended towards me.

When I feel lost and confused, scared or worried, all I have to do, is remember the warmth of that grasp and the promises and covenants made. I feel the ring around my finger, and I know…

I am loved.

Thank you, for that, Bozark. I could never have asked, for more.

The last entry was pretty whiny and I apologize for being so melancholy. I appreciate this place I have where I can vent my thoughts, which as you know are just all over the place.  Thank you so much for the uplifting phone call, Chronicler, that totally made my day.  I appreciate so much the love and support given to me. It’s my lifeline and I am so grateful for it.  Also, my friend Eva called not to long ago just to check in, and things like that just make life worthwhile. I have also received bunches of emails inquiring about Ethan. Thanks so much for these acts of kindness.

Ethan is doing okay.   He seems to be okay anyway.  He is rolling around the floor, and playing with the few toys he shows interests in.  He is laughing and giggling and listening to “Signing Time”.  For him it doesn’t seem like much has changed.  He is back to his normal little ole self.

I’m not sure I have rebounded back as quickly as he has. I am feeling unsettled at not having a definitive answer as to why Ethan quit breathing.  I am concerned it will happen again. What about seating and positioning and riding in his wheelchair.  I’ve not dared strap him in his car seat or take him anywhere.   Ugg. What a worry.

Ethan’s teacher has emailed me several times, just checking in on him. In her last email, she stated that the kids ask about him every day and want to know how Ethan is doing.  That tugs at my heartstrings knowing that they care about him and are concerned.  Also, I feel badly for the other students that were on the bus, when Ethan had his episode. That must have been very scary for them.

I spoke to our Pediatrician last night. He has been out of town.  Can I just say, I love that guy. He is very understanding and reassuring.  He ordered some tests for Ethan, that we have to have done tomorrow and he expressed concern over the situation as well.  He told me not to send Ethan to school, until we get to the bottom of things.

So uncharted territory is on our horizon. How that is different from the rest of this journey I don’t know!

The State High School Swim Team Meet is looming before us. And with it, the end of an era for Miss Victoria.

How can it be, this day alrealdy here. Just looming ahead. To be scratched off the calendar, this month.

I sure do wish someone could explain to me, how time just goes by faster and faster and faster, when really you just want to tack it down and enjoy it.

For her, it couldn’t go any faster. She is just itching to head forward. To forge on and carve out her future.

She is delightful.

So the end of swim season is here. GOOD luck at State, BEARS! Swim Hard, strong, and with confidence.

Water Polo is next! Oh joy!

I am starting to gear up for some of the changes that are going to be taking place.

Miss Vix is heading off to college soon. Sooner than I want, and definitely not as close as I want her to be.

She has talked about California some. I thought we had her talked into BYU Idaho. Heavens, I would be happy with her at Utah State or Weber State University.  But alas, they don’t have her programs, or else they are too close. (hum, I am seeing a trend here)

She is bound and determined to become a Physical Therapist, and she has her heart set on that program.

Big Sky Country is looking better and better to her. She all but has her heart set on Missoula Montana to set out on her educational pursuits.

I am trying to have an open mind, and encourage her to go. I want her to spread her wings and fly. I do, I really do, I really do. I think I do. Well, I am trying!

I am grateful that she wants to go, yet I would love to just keep her here.

I feel like Beth, in Little Woman... “Why does everyone want to go away? I love being home. But I don’t like being left behind”

Though I am grateful for these new experiences, I am also terrified of the unknown.

I am so glad, she is ready.

The dreaded call came on Thursday.  Quietly sitting at office and my phone rings. Oh so innocently.

My lovely son. Yes, the one you know and love finally made his first move at school. “He is crying and screaming” his poor teacher said.  “We have never heard him scream like this.”

I didn’t remind her, that we had discussed this to the end of the universe and back. I did not even roll my eyes. I was quite nice to be honest.

“Would you like me to come and get him?” I asked.  I already knew, this is why she is calling.

I drove the 12 miles to the school, walked in and grabbed him up in my arms. I carried him to the car, casually chatting with him, amid cries.

“Ethan, you are being naughty! What is the matter? ETHAN… you need to calm down.”

Loaded his wheelchair in the back… all the while his blood curtailing screams that could wake the dead.

I started the car, and proceeded to chastise him all the way home.  Giggles and laughter met my lecture.

Have I mentioned that Ethan actually quite likes, loud voices? He gets giddy when I use my stern tone.

We got home, I turned “Signing Time” on, and we had ice cream and pears.  I told him what a a little punk he is, and he laughed at me some more.

My baddest boy, is sure a darn cutie.

I’m still not sure, that sending to school is the right choice.  I’ve bitten my nails and wondered and tried to consider all things.

Is it not the most irritating thing in the world, trying to make the best decision regarding your children, and never really knowing the outcome, other that what is pursued?

I feel enourmous amounts of guilt. Have we done enough? Have we tried enough? Searched enough? Was pulling him out of school before, the right thing? Perhaps by doing so we held him back? How much is too much? Where do we draw the line.

I suppose it is the same age old question for every parent, no matter the talents or limitations of their children. I suppose I have asked it, in regards to my other children.

I know not.

I just know that for all intents and purposes every single thing we do with Ethan is a question. I look for every possible sign. I study him, watch him, second guess everything.

It’s exhausting.

I did receive this email from Ethan’s teacher. Hopefully we are on the right track. It’s only been two days, so it is very early to even start contemplating.

HI Lisa, I just wanted you to know that Ethan did great today. He started to get upset about 2 so we took him for a walk and then turned signing time on and he was great for the rest of the time. He would not try anything to eat today at snack. He really laughed at the music on the drum. The other kids love him. They all came over to tell him hi and they all want to play with him. Things seem to be going well. Leslie will be coming to see him on Monday.
Thanks, Kari

It sounds great. I’m thrilled. I was estatic when I received this. She sent it promptly after school ended on Thursday.

However. Friday, Saturday and most of Sunday, Ethan has screamed his guts out. (Although at the moment he is being a total doll)

Who knows. Any ideas?