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The sun has finally come out from its winter hiding place and the temperatures are starting to rise.  The grasses are green and everything is still in full bloom.  We’ve had quite a “spring”  here in Northern Utah.

Currently this picture is on my profile status on Facebook.  I picked it for a reason, and have been asked a couple of times about it.  S0, on this billowy afternoon, as Ethan is giggling on the floor and I am sitting here looking at the beautiful scenery outside my window–I thought I would delve.

Since having Ethan and the entire cornucopia of experiences he brought along with him, all that I have thought I believed in has been challenged. All the difficult questions we avoid night and day have been inescapable.  Truly teetering on the edge of the “do I really believe” fence- I have walked.

I was reminded last week after seeing a film at LDS Temple Visitor’s Center of my convictions regarding promises given to us by our Savior and Heavenly Father.   This film was a brief depiction of Jesus’ life.  It showed the miracles. The healing of the sick, the blind, the deaf, the afflicted.  Simple video images, accompanied by  amazing music–It was a humbling experience and a powerful reminder to hang in there, hold tight and to be strong.

With out question, I know that someday Ethan will be made whole.  The earthly ties that bind him will be removed and his spirit un-contained. What a transformation that will be.  A body perfect from disease and restrictions. What sheer delight  it will be to get to know Ethan, in a different window.

That knowledge provides sustenance. It brings you through the hard days, and is a reminder to be grateful on the good ones.

Well, that and diet cola, a bit of humor, good friends and supportive family.

So back to this picture.  I can see my boy, sitting in the warm summer sunshine- puffy clouds, hanging out with his dog. A smile on his face–

It will happen– I know it.

“Oh what do you do in the summertime when all the world is green….”

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

I have always been nocturnal. I am sure I was born that way. Early mornings have been a life time struggle for me and as time wears on it just gets worse and worse.

These days I am often greeted with nausea like you can’t imagine and painful cramps in my stomach. After I work through those, I just feel incredibly weak and tired.

No, I am not pregnant. Just sick. Someday, I’ll tell ya about it.

Getting Ethan ready and on the bus on time along with the typical morning chaos is about more than I can cope with. He takes so long to wake up and requires a bath and getting dressed, strapping in him in his wheel chair, and getting him out the door. It seems easy, but it is not.

He is getting bigger and heavier and taller and harder to manage. His fingernails grow at a fierce rate and I swear no mater what I do, I can’t keep them trimmed. Bathing is tough too. I realize I am complaining, again. Just ignore that part of my whiney post. (The Bozark suggested to me earlier today to call the Waaaaambulence…)

We have talked and talked, the Bozark and I about doing something to stunt his growth and doing something medically to him to keep him from getting much bigger. It is one of the most controversial things out there. I would love to have input on what everyone thinks.

There are so many questions. What if’s and how comes. But what it most adds up too is this. Ethan is never going to be capable of making his own choices and decisions. Ethan will never be able to communicate his dreams or his desires, we don’t even know if he has the capability of having them. He is an amazing kid and has done so much more than we ever though he would. Yet… what if.

What if someday we actually learn something about the brain? What if there is some amazing piece of medical technology that comes out that can fix brain damage? What if they can replace the optic nerve, and figure out a way for a brain to get oxygen to it, where before it did not.

What if we think he can’t, but someday he can.

Then where will we be?

When does what is easiest for us, infringe on his rights? What about his personal rights?

But, what if…he is like he is now, forever. What will he look like and how will he physically feel, if he is rolling around on my floor at the age of 45, sucking on a bottle, wearing a diaper. What about his back, will it ache? Ethan already has muscle cramps that cause him to scream out in terror. What will he be like then?

As I stumble around, through the day my thoughts are consumed with all of these questions.

I sure do wish I had some answers.

Up and coming is the annual Deaf Blind Parent’s Conference, for parents in Utah, who have a child with this particular diagnosis. This year the theme is SHOES; Strength and Hope through Other parents Encouragement

I have to tell you, that this gathering of parents is the one place I feel at home. Most of our children are quite similar in abilities and our stories are somewhat alike. They speak the same language as we do and walk a path that is very familiar. Our struggles and celebrations are on the same level and we “get”, the oddities that others outside of this “group”, over look or don’t even see.

There is much to be said for peer-to-peer support. That is what they are calling it, these days. The politically correct way of saying it, at least at the moment. Bringing parents together, to network, share ideas, swap stories, celebrate inchstones that we have discovered over this last year. This conference, provides us respite care for our children, an over night stay at a nice hotel, a great dinner and opportunities to get to know each other.

With the theme being S.H.O.E.S they have asked us to bring a new pair or gently used pair of shoes, to donate to a charity to help needy families. I think this is a fabulous idea.

Our keynote speaker this year, is John Bytheway, and I am betting it will be uplifting and full of encouragement. Which is something I need, and I would be willing to go out on a limb and say other parents need that as well.

Things like this are sustenance through the dark, long, hard hours. Some of the folks we will visit with, will have horror stories compared to ours. Others will be shocked with what we have to say. Either way it goes, there will be conversations that will stay with us. Next year, we will gather again. Mixing and melding and for one brief weekend, everyone there, will “get” us.

That is pretty remarkable.

I have a million things going on in my mind, and I have no way of even being able to come up with a title let alone a post. So I am going to ramble.

Today, I had the chance to talk to one of Victoria’s friends, Veronica (part of Team V, in water polo) online. I love her, she is such a gem! She offered to adopt Ethan as her little brother. She then asked, what were the things he COULD do. Ah, now that of course makes my day. I was happy to fill her in. There are so many things we didn’t think Ethan would EVER do. When I told her that, she asked what. So I answered a quick little summation. It does my heart good to focus on the positive. To talk about his strengths is a reminder of all the things Ethan has been able to learn, as well as how we have grown.

The Bozark and I have been reconnecting with his siblings. What a joy that has been. We have an incredible sister-in-law that has been very instrumental in bringing everyone together and for that, we will be eternally grateful! We are delighted to be introduced to two wonderful nephews and a beautiful niece. We met with his family and had an impromptu baby shower, for his youngest sister who is expecting a new baby any day!!! That was a blast, and we have been having so much fun. We all went to the zoo, and scampered around looking at the animals and celebrated our youngest nephew’s, 3rd birthday! We are looking forward to getting to know them better and we even have a camping trip scheduled for the end of the month that we are just dang excited about! I can’t believe how enhanced our lives are, and how grateful we are, to have this new adventurous path to travel down!

Ethan, my gorgeous young man has been on the steady upwards incline for a while now. He is doing so well, that I can’t believe it. I’m just amazed with all the many things that he has been doing lately. Some highlights; He attended the Independence Day Parade, with us and was incredibly well behaved. No crying, fussing or having a fit. After the parade, we walked down to the park for our small town festivities. While the other kids played and had a great time, Ethan sat in his chair and later on my lap, for a great while, before we decided it was time to go home. He did so well, I could not believe it! He laughed and giggled and played, and completely behaved. I’m STUNNED. That is all I have to say. Later, we took him to the fireworks where we hung out with the Bozark’s family, and again he played and laughed and watched the fireworks. No screaming, crying ect. What a marvelous day. I am so proud of him. Ethan has also been working his ability to clap. He doesn’t have much use for his right arm (we are hoping that some day, he’ll get the memo that he even has one..) So he moves his left arm, across his body and claps. WOW. That is something I never ever would have thought possible! Another MAJOR inchstone, has been summer school. He has transitioned from his regular classroom, to another room, with a different teacher and at a different time of day. Are you kidding me? We were all prepared for the very WORST. Not only that, but it is so much hotter and he is incredibly heat sensitive. Our boy, has sat up in his wheelchair and adapted beautifully. All reports from school have been favorable! He still has times where he is very fussy and cries. We do our best to console him. Sometimes, we simply can’t. However, that is happening less and less. I’m keeping my fingers crossed!

We are preparing for our the Steven’s-Taylor annual Camp-A-Thon. We most often refer to it as the Rebellion. This will be the first year with out my Mom, and I am trying very hard to gear up for it. This reunion was her thing. It literally meant everything to her.She would wait and look forward to it all year long. Then come the long trip home she would start planning next years. I think it would be safe to say, she was the Matriarch of the family. It was so important to her, that come August the entire family would pack up, and head to the mountain. She made me promise her, just a day before she passed away, that I would do my best to carry on this tradition. I’ll keep it. Though, it will never be the same with out her.

Tomorrow will mark the eighth year we have been with out my Dad. There will always be a special place in my heart for Independence Day, simply because that was the last event we spent with him. He drove off in his big maroon Kenworth, on his last trip and left us smiling and waving at him from the Fireman’s Fundraiser Breakfast. Though, he wasn’t perfect, he was the best. I’ve gained many a lesson from him, and I miss him desperately. Sometimes it comes in a physical ache. I wish he would have known Ethan in this life. He would have been his champion. He was the absolute supporter of the underdog and he would have loved to see his grandchildren participate in sports. He used to comment on how he hoped he would live to see Kaden play high school ball. That wish was not granted, nor did he ever see Victoria play water polo. He would have really enjoyed that. When the swish of that ball hit the back of the net, in our sudden death state championship water polo game, my first thought was, I know my Dad is cheering for her, from on high. The youngest grandchild will only know him through the stories, which is a shame. However, I am grateful that we have those to share. And, share we will. You can count on that.

My job has had some twist and turns in it lately and I have learned so much about myself on this journey. I am so grateful that I have been granted this opportunity. This last month we have had some people out on personal leave and it has left a gaping hole in our system. Everyone has thrown in the towel, on our schedule and just tried to pull it together and do what we can. I am always surprised by how people react to things and accommodate for the need, even when it is tough. I have been able to work with some adult clients, and I have come to understand and appreciate how much effort and investment they have into being successful. I have often judged way too quickly and thought far too harshly about peoples situations. I see things a little differently now, and changing that view, has been really good for my personal growth and development.

Life is quite a journey, isn’t it? Gratitude is what I feel this day.

I’ve been hearing this song, at various places, and it has caused me to pause and reflect.

I do remember falling in love with the Bozark. I remember the first time, we uttered the phrase to each other. I was older, and had lived a little, and I thought I knew all there was to know about love, romance and relationships.

The first big argument we had when I was all upset and mad, he showed me, what love was really about. Forgiveness. And, I thought I loved him then.

Through the years, and trials, hardships, laughter, adventures, and goodships, those experiences showed me a deeper understanding of love, and something grew with in me and once again, I thought, so this is it, this is what “love” is.

Carrying his child and feeling that maternal bond with him yet again gave me a deeper look into existence, and the cultivation of respect and a renewed responsibility to our relationship was formed. I looked across the operating table at him, he stood there never wavering, held my hand, and our journey on another road began. I didn’t think, our relationship could grow any more close or the bond any stronger, and I thought, I loved him then.

The days and weeks passed and our new journey changed our lives forever. Yet, across the room I watch him, holding his son, our amazing gift, as he laughs and talks with him, and I think, wow. The feelings from yesteryear, can’t compare to how I feel now.

I keep thinking, I have reached the end. That life’s experiences have allowed me to grow to a certain expectancy and yet the more we travel, the wider the capability for affection and love grows. The deeper, comprehension often takes me by surprise and I am amazed. Life’s pathways, the sweeping canyons and vistas have provided me with a stunning connection that still mystifies me.

It never occurred to me, as I started out on life’s adventure that there was more than what I already thought I felt. I’ve learned that love can be unconditional, it can be work, it can be hard… but, it is so worth it.

And, I thought I loved him then…

Eth loves laughter. On TV or off, he almost always responds to laughing.

He loves bantering with his Dad. They Ugg and Ugg back and forth and it is funny to watch. Ethan lays on the floor, arches his back (Like he is doing a back bend) and grunts back at his Dad. Jay can get a good response from him too. Vix and I are most often ignored.

Kambo and Hailey can do a boop boop booop up his stomach with their pointer fingers, ending at his nose with a loud boop, and he giggles and laughs at them, right before he tries to chomp off their fingers.  All is fair in biting and war with E.

He has a giggle ball, that he can grab onto and play with. This is the first toy after thousands of dollars worth of attempts to buy something that interests E.

E absolutely hates Avril Lavigne, Her voice comes on the radio and he starts screetching.  Sorry Avril (whom I am sure is a devoted Lisa’s Ramblings Reader) I have no idea why he doesn’t like your um, singing.

My son, whom I am thinking we might need to test that he belongs to me– does NOT like chocolate. Not even a little bit.  On Valentines Day, I put Nestle Quick in his Nestle Peptimun Jr. Bottle, and he put it up to his mouth, and before he could even suck on it, he threw the bottle across the room.  No chocolate pudding. Zip.  I think this is a crime, and clearly there needs to be some DNA testing.

Ethan’s feet are almost always cold. No matter what is put on them.

My gorgeous child who can not sit or stand on his own, can with in a nano second, wiggle and giggle his way out of his socks!

Ethan’s favorite color is green, and his talisman is a frog !

Ethan can’t tolerate quiet. Music or the TV is always on. Which drives Mom nuts (short drive), but we do what we can to make Ethan happy.

Ethan loves baths, but really hates getting dressed or undressed. He wiggles in the water and splashes so much that it is really funny to watch that kid move in the tub!

Besides biting human flesh, Ethan’s next favorite thing to suck on is the carpet. He licks, bites, tastes and smooches the carpet. No matter where he is. (IT IS SO GROSS)

Ethan loves to ride in his wheelchair as long as you are going over a bumpy surface. Bump, bump, bumpy.  Smooth- um that would be a big heck no.

Just a bit of trivia!

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!

Tonight, I sit here and wonder about life. I question all I believe, and stare out the window.

All the doubts and questions flow in, and there is little solace.

I dream of bubbles and frogs, puddles and kites. I want Easter baskets and baking cookies and tractor rides with Dad. I want to play in the grass and go to the zoo and put puzzles together. TV cartoons on Saturday mornings, and Lucky Charms. Willow Park and Disneyland, the ocean. Historical sites, and places that we’ll never go.  I dream of sand castles and coral reefs, dolphins and Sea World.

I was folding clothes the other day and said to The Bozark, why do they put pockets in babies pants. It’s not like they use them.  Then I realized, pebbles in his pockets would be a normal  for a five year old. His secret hiding place for snails and things.  He isn’t a baby anymore.

I am pretty sure it isn’t supposed to be like this.

Positive in fact.

We came so close to losing him today. Wow, how things can change in a blink.

Ethan had two seizures last Sunday night, and two on Sunday.  After consulting with everyone, the team decided to put Ethan on phenobarbital, at least for a little while and see if that stopped the seizures.  Not my first med of choice, but then I can’t find my neurology degree in the closet so I guess I’ll let the experts have it.

Ethan has done pretty well on the med. Just slightly zombied out a little bit, but for the most part, retained his sparkle.  Which most of you know is my constant first concern.  After a long week, and a really good weekend the Bozark and I decided to send him back to school today.  I emailed his preschool teacher about the situation and let her know Ethan would be back.

The bus came to get him today and with a smile and a typical candor Ethan left, his usual self.

Somewhere between here and school, the aide on the bus noticed Ethan wasn’t breathing.  The bus driver pulled the bus over, and the aid pulled a lifeless Ethan out of his chair.  He did not have a pulse and was non responsive. His lips and gums were blue and had a sallow pallor.  They called the ambulance who came and got Ethan. By the time the ambulance had arrived, Ethan was breathing but unresponsive.

The Bozark was out of town, and I was in Tremonton. My phone, which is being replaced tomorrow had spontaenously turned off.  No one could get a hold of me.

The ambulance took Ethan to the ER in Brigham City, where by the time they arrived he was looking around a little.  By the time I got there, his teacher, bus aid and driver were all gathered around him.  Blood and  urine tests had been order, so had chest x-rays.

It’s been a very long day.

No one can explain why Ethan quit breathing.  No one has an explanation of any kind. They did find that his lungs have some issues, and he was diagnosed with pneumonia, though the ER doc didn’t pretend that was the cause of the main problem.

Can I just say, how overwhelmed with gratitude we are, for such an alert and on the ball bus aide, and driver.  How does one say thank you, for saving our little boys life?  I’ll have to find a way.

I’ll keep ya posted.