Update on Beau!

This picture is of Beau and I at the Oregon Commission for the Blind. They held a BB Q for Blind students, and it was a day I had off work so we went together. It was an interesting experience. Those cooking on the grill were either blind or they wore sleeping masks so they couldn’t see. (The biggest question I had, was how do they tell if the meat is really done inside?) We had to leave before they actually ate, but enjoyed watching--listening-- to the process and visiting with some of the other blind students.

My intent in reviving our Everton Family blog is to use it as an avenue to give updates on Beau’s progress. So here is the latest news on Beau.

A SUMMER OF PROGRESS

Mallory - Beau’s Caregiver

The past 4 months have been months of progress, I feel! Mallory came home the first part of May and brought with her, the enthusiasm and commitment and energy that she always possesses to bring positive change with Beau. At that time, we had been working with him on walking on the treadmill every day, but it was hit and miss. At that time he was walking at the slowest pace the treadmill goes (l.0 speed) and could only go about 3-5 minutes before he was completely exhausted. Mallory took this as a personal challenge to help Beau progress towards better stamina and strength. She was able to motivate and push him just enough that he gradually progressed. By the time she went back to BYU the end of August, he had increased his time up to 30 minutes and his speed up to 2.5. This was an amazing accomplishment, we felt. She took her job of helping and caring for Beau very seriously and helped us establish a consistent daily schedule. She took him on walks and on outings and helped him listen to music and favorite programs and implementing a scripture study time and listening to conference talks. She was a ray of light and energy in our home and we are forever grateful for the sacrifices she made to come home and spend this time with Beau. It was a joy to have her home with us.

Rehab Without Walls

The other huge progress that happened this summer was the opportunity we had to get Beau started in a Brain Rehabilitation program. In May, we took him to Dr. Erb, who is a Physiatrist (which is a doctor that specializes in rehabilitation). Dr. Erb specializes specifically in Brain Rehabilitation. It was after our visit with her that gave us hope that most of the damage Beau has received from the radiation treatments he had, he can recover from with time and with therapy. She gave us hope that he can become independent and can adapt to being blind. She found a facility that she felt was a perfect fit for him which is called Rehab Without Walls. They are a facility that comes into our home to work with him and provide the therapy that he needs. Because of the confusion he deals with and his left-side neglect that makes it difficult for him to know what direction he is going and causes some instability and balance issues, it would be very difficult for him to go to a facility as an out-patient and be able to learn to navigate in completely unfamiliar surroundings. When Rehab Without Walls came to our home to make an assessment and to educate us on their program, I knew it was the right fit for him. The next hurdle we came to was finding out that our insurance would not cover it. Because there is very limited options for him, I was able to plead our case with our Health Insurance and convince them to cover his therapy with Rehab Without Walls. They started working with him at the end of July and we have been so pleased with the progress we are all ready seeing. It isn’t huge progress and sometimes we feel like we take two steps forward and one step back, but we see little signs of improvement overall. We have been told this is going to be a very long slow process, but there is hope at the end of the tunnel. That is the most wonderful part of finding this rehabilitation opportunity is that we feel like we are working towards something positive that we can participate in.

Rehab Without Walls have been wonderful to work with. Their policy is to come into our home and find out what Beau’s long-range goals are. Then they take those long range goals and break them down into small goals that work toward those larger goals. They train us on what we can do to support what they are doing and give us things to work on with him right in our home. Then they start working with him in the community. For Beau, their ultimate goal is to work closely with the Oregon Commission for the Blind so that eventually he can attend there regularly and benefit from their program in helping him adapt to being blind and lead an independent life. The therapists have been wonderful to work with. They are friendly, professional, compassionate and motivating. We feel so blessed to be working with them. Beau keeps thanking me for working so hard to find help for him and he keeps asking me how he can help. I tell him that he has the biggest job and that is to work really hard at the very repetitive and sometimes boring therapy they give him. He is such a trooper and has such a great attitude about it. He works really hard even when he really doesn’t want to. He is an inspiration to all of us!!

The bad news is, that our insurance company has decided to limit the amount of visits that they will cover because of a discrepancy in the billing methods with Rehab Without Walls and our coverage will run out the beginning of October. I’m slightly devastated about this, but I am not going down without a fight. They listened to my pleas once so I hope they will again. I’m in the process of getting all my information together to present to them our case. Please keep us in your prayers, that we will be successful.

Maureen Valdez - A Wonderful Caregiver

The other HUGE development in Beau’s update is that as the time approached for Mallory to return to college, we started looking for a new caregiver for Beau. This is a very gut wrenching process for me because it is such a leap of faith to find someone that we can trust to come into our home and give the care Beau needs. I felt very strongly prompted that I wanted to find a member of our church as a caregiver and so I posted a Job Description through the LDS Employment services and then networked through the Relief Society Presidents and Priesthood Quorums in the Stake. Mallory also made an announcement in the Singles Ward and we did receive quite a few possibilities for the job. All it required was that they were willing to go through a 4-hour Medicaid training to be approved by Medicaid.

We found Maureen Valdez through my friend, Lynette Hardy, who is a Relief Society President in Bethany Ward. I plan to do another post about Maureen, so suffice it to say right now, that we feel that our prayers were truly answered and we were blessed beyond comprehension for the gift that Maureen is to us and to Beau. We couldn’t have asked for anyone better.

I am so overcome with gratitude for the blessings we are receiving daily. This is quite a journey we find ourselves in....but it is a journey of learning and of hope so we are grateful for this opportunity to grow

There Can Be Miracles....When You Believe! Hood to Coast 2010

I'm a little late getting this post out because this

happened a week ago, so it may start to be considered old news!! But it's got to be recorded for posterity because it just doesn't happen every day!

We were called the “Long Running Jokes"

I ran the Hood to Coast with 5 of my 6 children and I'm still alive to tell about it. That is the Miracle!! Let me explain....I am not an avid runner. I did have a 3 year period of my life several years ago where I thought I would give running a try. It was back when Oprah had started running and she published her training schedule for someone who had NEVER run before. It was a ten-week schedule that involved starting out walk/running and added running a little longer each week and walking a little less, until you could run for 30 minutes without walking at all. I figured I could do anything for 10 weeks and then see if I liked it. I have never had an athletic bone in my body and never a real interest in it for myself, but I had a desire to become more fit and regulate my weight, and its something Bob loves, so I thought I'd give it a try.

I am a rule follower so I stuck to the schedule precisely and in 10 weeks....I could literally run 30 minutes without walking!!!!! Who knew it could happen?? I was hooked for about 3 years, I ran regularly and got to where I truly enjoyed it. I always lived with this fear that if I ever stopped, I would never start up again. But you have to understand that I still was not anywhere near a competitive runner. I never ran a 5K. The most I did with my running was the Turkey Trot on Thanksgiving morning and I did run in the Starlight Parade one year both just for fun. I never had aspirations to run a Marathon or even a Half Marathon.

Then, I got a job and my schedule got more complicated and I did quit running....and I did think I probably would never return to it. Then last year our family was able to get on someone's team and were able to fill a van with just our family. The thought crossed my mind then that I MIGHT want to try it, but never enough to ever verbalize it. Plus, I didn't want to take the spot of anyone else in the family that wanted to run, so I stayed home and played with my grandkids instead. Beau was slated to run in it, but when he came home and was starting to deal with all the problems he is having now, he had to drop off the team. He did sign-up as a volunteer and helped out at one of the exchange posts. Bob ran in his place last year.

This year, we got our own team and our hope was to fill all 12 spots with family members. We started out the year with more than enough family (and close to family) to fill both vans, but as the year progressed, one by one they dropped out until we were having trouble filling both vans. Zach is our leader and would come for Sunday dinner each week, reporting on the status of the team. I could see how discouraged and frustrated he was getting and so I decided to go for it! I volunteered to run!! I even surprised myself when I volunteered because I was not in good shape, hadn't run for atleast 4 years, was working full-time and caring for Beau whenever I wasn't working. It would be harder than it had EVER been before to train. But....I decided, where there's a will, there's a way and decided to do the best I could.

It seemed insurmountable at first because I could not find a time to work out....but then Mallory came home.....and saved my life in more ways than one....but because of her, she supported me in finding time to train when she could care for Beau. Even then, it was May and I wasn't sure I could be ready by August being as out of shape as I was and, let's face it.....I'm not a spring chicken anymore! For the first MONTH of training, I would feel like I was going to die each time I went out for a run. I would start each run with a prayer, asking for the strength to do this. Any level of a hill.....would completely overwhelm me..and it didn't seem to get any better, even though I was trying to run 3-4 times a week. Then one day, I was running and feeling especially discouraged, listening to my iPod. The song, "If You Believe" by Mariah Carey came on. The lyrics to that song really hit me.

Many nights we pray

With no proof anyone could hear

In our hearts a hopeful song

We barely understand

Now we are not afraid

Although we know there's much to fear

We were moving mountains long

Before we knew we could

There can be miracles

When you believe

Though hope is frail

It's hard to kill

Who knows what miracle you can achieve

When you believe

Somehow you will

You will when you believe!

As many of you know who may be reading this....our lives have been completely turned upside down and forever changed with all that Beau has been going through this year. It's enough for anyone in Beau's situation to get very depressed and never want to get up off the couch again.....but Beau gets up EVERY DAY and tries his very best to deal with all of it one day at a time and not give up. The magnitude of the reality that he is blind and struggling with confusion, still overwhelms me with grief, but he gets up everyday and deals with it....never bitter, and rarely feeling sorry for himself. His spirits, for the most part, are high and he tries his best to be positive. Every day, when he prays, he prays that "we will continue to have miracles happen in our lives!!" I find myself choking up every time I hear him pray, because I know he would prefer to choose the miracle in his life and he would choose that he could see again, but I also have been VERY aware of many, many other miracles, even though some are just small, but we are seeing miracles in our lives almost daily! It may be finding a wonderful caregiver for Beau, or getting the insurance company to cover rehabilitation when they wouldn't at first, to name a few.....and then for me, being able to run in the Hood to Coast with my other 5 kids and not let them down. In my mind, I was running for Beau, because he would LOVE to have run it with them, but since he can't right now......then I can do it for him! So after that song, filled me with HOPE and energy that I didn't know I had.....it moved me forward to help make this MIRACLE happen in my life. Running started to get easier and hills started to be doable.

can't even begin to tell you how I felt as I finished my last leg and knew that I had finished and had actually had some of my fastest runs during the Hood to Coast....it was so exhilarating!! And I can't explain adequately in words what it meant to have run with my 5 kids! I'm SO proud of them all....and it doesn't get much better for a mother than spending about 48 hours with my kids and watching them interact and work as a team and encourage each other and lift each other up. I love that my kids love to spend time together and truly love each other. It makes all those years of parenting, so worth it. They are all doing amazing things and making good choices in their lives. They are living their lives with integrity. What more could any parent ask for. !

So, this is from a mom, who loves her family very much and couldn't be prouder of them all and for a tribute to Beau, my wonderful, wonderful son who has endured so much. He has set a long range goal to be able to run Hood to Coast one day, with one of us as his sighted guide. We all pray for that day to become a reality!

Getting Deeper into my 50's

Well it's my birthday today....and it's been a wonderful birthday weekend! I've been able to celebrate for 3 days now. Friday, Bob and I went to a friend's daughter's wedding (Mitch & Diane Maurer's daughter, Erin) and then went out to dinner at the Outback and then to the movie, "Switch" with Jennifer Aniston and Jason Bateman. It was a cute show....and dinner was great! We loved having an actual "date night" which seem to come few and far between so we appreciate them even more!

Saturday, we went out as a family to Spaghetti Factory!!! Always a fun place to go. We reminisced a couple of times about going to the Spaghetti Factory every time Grandpa Everton came to town so it will ALWAYS hold special memories because of that. Then the "girls" (Ksenia, Mal and I) went and tried to see the movie, "Eat, Pray, Love" with Julia Roberts but halfway through the movie the fire alarm went off and the whole theatre had to be evacuated! They said we could get a free ticket for our inconvenience and then we could also go back in and see the rest of the movie where it left off as soon as the fire department cleared the building and OK'd everyone to return. So....after a short delay, we went back in and watched, maybe 5 minutes more of the movie and the alarm went off AGAIN!!!!! I know!! How often does this happen??? Never! So this time we received ANOTHER free movie ticket and called it quits and went home. So.....we still haven't seen the end of the movie.....BUT we have TWO FREE MOVIE TICKETS!!!! Ksenia lucked out in a way because she is actually reading the book right now and was a little unsure about wanting to see the movie until she had read the book. We had to leave the movie right at the point she had read the book so now she can finish the book before she finishes the movie. It was still fun to be out with Mal and Ksenia!

Then, today, my ACTUAL Birthday, Zach, Ksenia and Lucas came over for dinner and brought with them the MOST DELICIOUS Blackberry Cheesecake with a chocolate cookie crust!!!! It was my request for a birthday cake and it was EVERYTHING I could have wanted. Bob grilled chicken for dinner and we had a delicious meal and Mal did dishes for me. I also enjoyed phone calls from my wonderful brother, Mark!!! and also from my kids, so it couldn't have been a better day!

I hope to just keep celebrating through next week when we have ALL the kids back together for the HOOD TO COAST!!! Watch for a report of this exciting event to come!!!!

It's Time to Start Again!

Well, it has been over a year since we've posted anything to this blog and so it's time to START AGAIN and keep our family blog going.

To start with, we are in the middle of a huge renovation project of our front yard. I wish I had taken a "before" picture of our yard, but sadly, I didn't, so those of you who are familiar with our home need to remember what it used to look like. There were two HUGE pine trees in our front yard that made it so very little of the house was really visible from the front. We also had a maple tree to the left side that grew like a weed. We would cut it back and before we knew it, it would have grown as big or bigger than before and started taking on strange shapes. We also had some big bushes lining our driveway on the right and arborvitae around the deck and at the sides of the house on both sides. Our deck used to be similar but a little smaller, but had seen it's better days and it needed to go.

SO, with the help of many friends, we have rebuilt our deck, which we LOVE. It is built out of Timber Tech which is the material that you never have to refinish and is very durable. We also built the deck so it could be easier for Beau to navigate having handrails all the way down on both sides.

Then, we also decided to clear our front yard and start a new landscaping plan. The trees provided us with wonderful shade and privacy, BUT the roots were pushing up the deck, our driveway, and sidewalks, and we were afraid our foundation would come next. The roots are the size of some tree trunks. They also were so shady and dropped so many pine needles that nothing could grow well underneath them. They also were extremely MESSY!!!! I will not miss constantly sweeping and vacuuming pine needles and buds from my house. It was a sad day the day they came down because it was like saying good bye to old friends, but it's giving us a feeling of starting over with something better now. It's hard to move on and accept change when you've been used to the same thing for so long, but change is a good thing and a time of renewal! This is something we need right now because of all the other changes we've gone through as a family this past year, with Beau's health.

So if you drive into our cul de sac and wonder where our house went, look closer....it's still there but looks very different because you can actually see it!

I will continue to try to post new information more frequently and use this as a way for you to keep up on Beau's progress. More about him next time!

Rip City

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Thanks to the Kindness of Strangers

So most of you who read this Blog already know that we moved into a bigger apartment (than our previous one) back in September in preparation of Lucas' big arrival. It's been kind of nice have the extra 300 or so square feet to sprawl out into. Of Course, as we sort of anticipated, the bigger the apartment... the greater the area to mess up. It doesn't take too long, but it definitely takes longer to clean our newer apartment than it took us to clean our first 615 square footer.

Quite often while wandering around the apartment picking up (after my own mess 99% of the time), I inevitably ask myself a couple of the same questions:

1. Why did I put my phone/keys/wallet/BG tester/other frequently used and crucial item in such a random spot? (no wonder i spend half of my prep time in the morning looking for my Intel badge)

2. How did we get so lucky that we have an entire apartment full of furniture and we haven't purchased more than two or three of the items for ourselves?

When we got married, due to the close proximity of our wedding day to the end of Ksenia's last Semester at BYU I had to move into our apartment (the old 615 sq footer) before Ksenia even had a chance to look at the place. I had talked to a few friends about picking up some second hand furniture they no longer needed, but I really hadn't put too much thought into it aside from finding the place and applying to rent it (very poor planning on my part). The day I moved in I had arranged to pick up a full size mattress, a TV that faded in and out of focus, and a couch that had long (very long) ago passed its dumpster delivery date. My future brother-in-law, Drew, helped me move in and it took the two of us less than two hours to gather the stuff from around Hillsboro and move every single item I owned into the apartment.

I remember sitting on the mattress after Drew drove off (no bed frame, just the mattress) and looking around thinking "Wow,if my future in-laws could see me now". I pictured them coming to our place for dinner one night and having to sit on the couch being held together by duct tape and reinforced with bailing wire eating off paper plates resting on their laps and grumbling to themselves about the unacceptable living standard that I inflicted upon their daughter. I slept in the apartment that night (Saturday) and tried to come to grips with the situation and figure out how i was going to make our newlywed nest look a little more like a home and less like an abandoned meth lab.

The next day i went back to my parents for dinner and Dad mentioned to me that someone at church came up to him and asked if he knew anyone who needed some furniture. These kind folks were getting ready to move into a smaller place after raising all their children and needed to offload some of their furniture. Being aware of my predicament, Dad told them he knew someone. That night after dinner I went over to see what they had... tons of stuff, and it was all in great shape.

The next day Dad called a friend with a trailer and six of us moved the stuff into our little abandoned meth lab. Three dressers, three bookshelves, a dining room table with six chairs, queen size mattress and box spring (with frame), a couch, and one desk chair later - our apartment actually looked like a home. I had only met these people once and they completely furnished our entire apartment. Ksenia never actually saw the old tattered couch (which we chopped up and slowly threw out with my parents trash - thanks Mom and Dad for letting it decompose in your Garage for 9 months) or the humble situation we almost ended up living in.

Recently, we have had a similar charitable act furnish our son's nursery. Some friends of ours at church very graciously gave us a crib, rocker, and stroller that their kids have grown out of. They are still in like new shape, and we are so grateful for them. I love to see Ksenia in the nursery with Lucas swaying in the rocker.

I don't know why i felt compelled to write this blog, i guess it's because I don't know if i can ever thank these folks enough for their kindness and generosity... Not that blogging really accomplishes that very well... but it feels like I'm saying thanks in a more lasting way then just letting the words slip out over clasped handshakes as i take their stuff away.

I hope we can one day be in a position where we can be as generous with a stranger in need, or even a closer friend, as these friends and strangers have been to us.




P.S. Speaking of strangers.... someone found this roaming the internets. I got a kick out of it.