Happy 12th Birthday Rachel!!!

 

Pamela Skyberg Digby added a new photo to the album: A-T BIRTHDAYS — celebrating this special day with Bekah Ward and 

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WooHoo! Our beautiful “Rachel Ward” of Oxford, Idaho, USA is now years old and we all know that being TWELVE really is a #PBD ~ Pretty Big Deal!

Rachel loves to dance, and still can!

Rachel loves school and is a very good student.

Rachel (AKA Aunt Rachel) loves helping out with Addie, her 1 year old niece.

Rachel is fun!

Rachel loves animals.

Rachel loves to swim.

Rachel plays the ukulele.

Rachel would love to be an artist when she grows up.

Rachel has five brothers and one sister and she loves them all!

Rachel is very kind and thoughtful. She is a great help at home. Her family has enjoyed all of the cute and personalized handmade cards she has created for them over the years.

Happy Birthday, Rachel! You are loved so very much!

Please join in as we send Rachel some birthday love and our Best Wishes from all around the world! #HB2anATkid #LivingWithAT

Rachel, her brother Ben and her sister Bekah ALL THREE need a #Cure4AT

ADA Disability Awareness

I just love this facebook post that was posted by Ben's speech teacher, Jennifer Putnam. We are so blessed to be surrounded by so many loving, kind, and talented people.

"July is ADA disability awareness month, in honor of the ADA national law signed into effect in July of 1990. It’s important to be aware of those around us who have disabilities and how to include them in our communities. God expects us to look out for people who are disabled and those who are different because they are made in his image too. His image is that of a human being no matter how a body functions or looks. This year I decided to highlight one of my clients, with his permission of course. This is my friend Ben. I have known and worked with Ben since he was 3 years old. He is almost 19 now. Ben has a condition called Ataxia Telengectasia (AT for short). This is a very rare neurological, genetic disease and usually takes the life of children with it by early adulthood. Most children are in wheelchairs by their teen years.

Not Ben…..he and his mother have done everything they can to make sure Ben was given every opportunity to work through the problems of AT or learn to compensate for them. Ben has overcome so much to be where he is at with AT. Some of things he has had to deal with are swallowing problems, dysarthria (hard to understand speech), ataxia in his eyes, respiratory and lung problems, extreme fatigue and unsteady walking.

This is just a fraction of what Ben deals with, but instead of giving up and not trying, Ben has built his body strength and stamina to the point he is able to take care of the animals on his family’s farm while his father has been sick with cancer. Ben drives a 4 wheeler with ease. He has a motorized bike to help him conserve energy if he needs to and he lifts weights everyday that he can. Ben overcame some of his feeding problems by having tube feedings through his stomach. This allowed him to gain weight and avoid burning calories unnecessarily. Ben eats orally too but makes sure he is careful when drinking liquids as they are harder for him to drink.

The coolest thing that recently happened was Ben was able to get Botox in his some of salivary glands to lessen the amount of saliva he makes. He has struggled with drooling for a very long time. Because of his disease Ben doesn’t “feel” the salvia. Now he has a way to manage this problem. The drooling was especially hard for Ben socially, but he is so excited to have a chance to work before his service mission for about 6 months without having that problem. He is ready to develop and grow outside of working at his family’s feed store where he has worked for several years.

In 25 years of working I have never met someone like Ben. His IQ is most definitely above average and he is the hardest working 18 year old I know. He never gives up! He won’t stop with his goals and his sweet smile melts everyone’s heart. If you can’t understand his speech……tell him. Ben will make his sentences shorter or over-pronounce syllables in words. Just let him know. He can also write down a message if needed.

I’ve been honored to work with Ben for most of his life. He is fearless and dedicated in every aspect of his life. He doesn’t complain about his lot in life and will do amazing things in this world as an adult. He has a heart of gold and needs others to give him a chance to grow. I fully expect one day to receive a wedding invitation from him and see him live a purposeful and productive life. Please watch out for the people like Ben in your communities and recognize they have many things to contribute that we might not realize. Sometimes the best gifts come in different packages "

Update on Ben: He just started a job working at our local thrift store (Deseret Industries) and will be working there until he leaves to serve a service mission in Provo, UT for the Church of Jesus Christ of Latter Day Saints in January. All of his older brothers have served full-time missions and this is something that is very important to Ben. I am so grateful for family that is willing to help make this happen and for how far the church has come in making these opportunities available to all people who have the desire to serve.

Miracles

When Larry was diagnosed with Stage IV pancreatic cancer back in July and given three months to live, my sister, Janice, who is a nurse, advised me to support Larry in whatever his wishes were. Larry's wish was to fight and live! Even though it has been a very difficult road, I have tried very hard to support him in his desires.

Recently I came across three quotes that very accurately describe Larry's stalwart nature and fight to live as we have went through this journey together:

1. "Difficulties are just things to overcome afterall"--Ernest Shackleton

2. "Perserverance accomplished what at first seemed impossible"-- Henry Knox

3.  "If you don't give up you can change your own odds"--Hank Smith

We are now almost six months out from Larry's original diagnosis and he is doing miraculously well. Since his first chemo treatment, about a month ago, he has been able to eat without pain and I am so happy to report that he has put on 13 pounds! His color looks good and he has the energy to accomplish things that he wants to do.

We also continue to do the majority of the treatments from Hope4Cancer (immunotherapy shots, boswellia shots, light therapy, sound therapy, juicing, clean eating, and a host of other supplements). We believe that the supplements have been a crucial part of his healing process, especially when it came to the "Flurona" (the flu and corona) that our family just got over. Larry faired really well through the sickness and was mildly down for a couple of days.

Larry started an extended water fast again today in preperation for his upcoming chemo on Tuesday morning. He will have chemo treatments Tuesday, Wednesday, and Thursday and will then transition to a juice, bone broth, and a protein shake diet for a few days. We are hoping to have just as good, or even better, results from this fast and chemo treatment. We will then go in for a PET scan next week to evaluate his progress.

One of the biggest struggles I have had through this process is finding adequate time for all of the people in my family with health challenges. Sadly, my three children with ataxia-telangiectasia (A-T) have been greatly ignored, so much so that I have done nothing with Ben & Rachel's feeding tubes since last Spring. They are faring ok without doing feedings, but I believe that they could be doing better if it was being managed. 

There have been many other areas of their care that I have been neglecting as well and I appreciate so much so many of the kind people in our lives who have stepped up to fill in these gaps, especially in regards to their school work and other needs that I am probably not even aware of. As so much of this is out of my control, I have had to turn so much over to God and trust that he would take care of things. I do recognize, however, since the demands with Larry have slowed down, that it is time to reengage more with their needs.

Bekah, 18, has come to me crying on a couple of occasions this past week crying because she has really started to struggle more with her speech and ataxia. I have just held her and cried with her. Mine and Larry's hearts are both broken. She has been planning on going to live on her own and go to college next year and my heart really broke when she told me that she doesn't know if she can go and live on her own because she realizes that she needs me too much. I still believe, if she really wants to go, that we can find the right accomodations and make it happen! There is nobody in this world who is more deserving of God's healing power than our sweet Bekah. God miraculously healed her immune system when she was five and I know that he has the ability to heal her now.

Ben, 18,  has been struggling more and more with lung issues (the no. 1 cause of death in A-T patients). He is very independent and has often disregarded much of the advice I have given him regarding his lungs, but he is starting to own his disease and do his own research in regards to his lungs. He really could benefit from getting back on his feeding tube, to not only put on some weight, but to also get more calories through his tube and avoid doing more damage to his lungs. When Ben was just over a year the Spirit very clearly told me that something was really wrong with Ben, but assured me that everything would be ok. I have often reflected back on that assurance from the Spirit as my heart also breaks watching him struggle.

Rachel, 11, is really loving middle school. The staff at the school have been so good to just jump in and assist her with things that they can see that she needs. For one of her classes and for lunch, she has to make a long walk over to the high school which is very exhausting for her. She has a very nice pink powered wheelchair, that she has used for the past two years, but now that she is a "cool" middleschooler she doesn't want to use it. Thanks to a very kind, and persistent teacher, they have slowly gotten her to comply which has made her life easier. They also have a "Rachel lunch" in a classroom that is by the middle school once a week so that she doesn't have to go back and forth quite so much.

Tonight Larry and I attended a missionary prep fireside with Ben & Bekah where Elder Brough shared the quote from President Nelson that states: "Obedience brings success, exact obedience brings miracles." Elder Brough went on to elaborate that "exact obedience" does not mean that we are perfect, but rather quickly repenting (changing) when we make mistakes and getting back on track.

As a family we have decided to put this promise in action and pray for miracles for our three A-T children. In Mark 12:30 it says, "And thou shalt love the Lord your God with all your heart, and with all your soul, and with all your mind, and with all your strength." As a family we have decided to practice "exact obedience" by showing our love to the Lord by having our personal and family prayers daily and having personal and family scripture study daily. In return we are asking the Lord to give us miracles for our A-T children according to his will. We are so grateful for all of the blessings and miracles that God has allotted to our family and pray that we may continue to be worthy of these miracles.

We recognize that Larry being here with our family for the past three months has been a miracle and it has really touched my heart as I have realized all of the things that he has continued to be part of because of this miracle...

The Bar J Wranglers farewell concert. Sadly, Larry was in the hospital during this performance that he really wanted to go to, but Larry's brother vicariously went in his place and Larry was there in Spirit.

Our annual Ward Feed dinner at the Dude Ranch. If you zoom in and look at his glasses you can see that his sense of humor is still alive and well.

Bekah dance competition and Rachel's Christmas dance performance. Sadly, Larry was not able to attend either one of these, but he was able to cheer them on from home. He was, however, able to make Nate's Christmas performance at the elementary school.

Larry has been here to help out with all of the snow removal at home and at the store! I am so grateful for this as this has been a very snowy season and I don't know what I would have done without him. This is a picture of our drive home from Pocatello on one of the worst snow storms of the season. I really woudn't have made it home without him. I would have gotten a hotel or slept in the car. 

As we have not all been together for Christmas in several years, this was an especially special Christmas for us. Not only were we all together, but Larry was miraculously able to be here to celebrate it with us!!!