Tuesday, November 25, 2014

A memorable day

November 25, 2014

Today marks 6 months since Kera's passing, and I thought this would be a perfect time to update my blog.  Dave sent me a text yesterday saying the mortuary called and they are putting Kera's headstone in tomorrow.  I was surprised to hear the good news since I hadn't heard anything for a few weeks and we still weren't sure if they would get it in before the ground froze.  It also made my heart happy when I realized that her headstone would be put in on her 6 month anniversary.  I know this wasn't a coincidence.  I know Kera had a hand in it.  The day has been full of memories of Kera.  I went over this morning to remove some of her things from her grave to clear it out, and the truck with her headstone pulled up right as I finished loading the items in my van.  I was able to see them unload it off the truck and everything.  I left before it was all set up, and I took the boys over later to see it.  It is absolutely beautiful.  I love everything about it.   I felt such a reverence when I went there.  I was experiencing mixed emotions, since having a headstone makes everything so real.  It is a permanent fixture.  This has really happened.   But I am also relieved to have it here and for me to have a bench to sit on when I visit her, and I know she loves it.  
I think she was just so excited for it to be here and for me to see it.  Everything went smoothly.  I came home and posted on her fb page, and put some pictures of her up off my phone. I had a friend come over today to help me go through some of her old t-shirts because she offered to make me a quilt with them.  It will be a special comfy blanket that I can curl up with and be reminded of her.  Dave went stopped on his way home from work to see the headstone too.  When he got home we spent some time tonight talking about Kera and reading scriptures together.  All of these things added to the spirit in our home. I love days like this when she is very near.  I also had a thoughtful neighbor bring a sweet ornament with a butterfly and an inscription on it.  She had written a touching letter to our family that I read out loud.  Of course I cried and was emotional, but I know that also is helpful.  We watched some home movies of Christmas and Disney world last year.  It was sad at first, but the more we watched, the more I didn't want to turn off the video.  I loved hearing her voice and seeing her face again.  
I cannot believe that it has been 6 months already since I held her in my arms.  In some ways the time has flown by, and in other ways it feels as if life has moved in slow motion.  
Thanksgiving will be here in two days, and then Christmas will be here before I know it.  I am really not looking forward to Christmas this year.  Even hearing Christmas music makes me teary eyed.  I loved our magical Christmas last year, and this one will feel empty.  I know that Kera would want me to be excited for Christmas and the celebration of the Savior.  A friend shared this poem with me on Kera's FB page, and I want to share it here.  It is so touching and good to keep in mind during this holiday season.  
 "My Christmas in Heaven".
I see the countless Christmas trees around the world below,
With tiny lights like Heaven’s stars, reflecting in the snow.
The sight is so spectacular; please wipe away the tears,
For I am spending Christmas with Jesus Christ this year.
I hear the many Christmas songs that people hold so dear,
But the sounds of music can’t compare with the Christmas choir up here.
I have no words to tell you the joy their voices bring,
For it is beyond description, to hear the angels sing.
I know how much you miss me. I see the pain inside your heart,
But I am not so far away… we really aren’t apart.
So be happy for me, loved ones, you know I hold you dear,
I’m glad I’m spending Christmas with Jesus Christ this year.
I send you each a special gift, from my heavenly home above,
I send you each a memory of my forever love.
After all, love is a gift more precious than pure gold,
It was always most important in the stories Jesus told.
Please love and keep each other, as Heavenly Father said to do,
For I can’t count the blessings or the love He has for you.
So have a Merry Christmas and wipe away your tears,
Remember, I am spending Christmas with Jesus Christ this year.
~I love you with all my heart Kera 
Love,
Mom

Tuesday, September 9, 2014

Stake conference talk

Tuesday Sept. 8, 2014
As I mentioned in my last post, I was writing my talk that I was asked to give in stake conference on Sunday.  I was glad to get it all written before we headed down to Riverton to attend my niece's viewing and then funeral on Saturday.  The services were very spiritually uplifting, but I was also emotionally drained by the end of it, as it brought many memories back for me of my sweet Kera's funeral services.
My brother, my sister-in-law, my niece Grace, and my nephew Sam all spoke, along with their stake patriarch.  I was amazed at their composure throughout their talks.  Grace gave a great talk about music and her sister Cora, and talked about how the song "There is Sunshine in My Soul" reminds their family of Cora.  This was also the opening song at the funeral.  Well on Sunday at our stake conference after I spoke, our intermediate hymn was none other than "There is Sunshine in my Soul".  I felt like that was Cora's way of saying she was there with me.  I know my Kera was there helping me speak as well.  I didn't want to break down in front of the whole congregation, and I think she helped me keep it together so I could share my message.
I wanted to include a copy of my talk here on the blog.  Anyone who would like to can read it, but I really want to keep it to have and look back on later when I compile this blog into a book.


Stake Conference talk given on Sunday Sept. 6, 2014
            I am Staci Goar and our family moved here to West Point two years ago.  The topic I have been given to speak about is "Called to Serve Him every day of your life"
I will be referencing two talks by Elder Eyring, one is called "This Day", and another talk called "Serve with the Spirit" that he gave at a priesthood meeting.
            To serve God,  we must be doing the things necessary for Him to speak to us and for him to reveal to us how he would like us to serve.  We cannot serve others when we ourselves are not in tune to the spirit and worthy of his light and revelation.
            The first thing we can do is have daily scripture study.  I have found that taking some time each day to ponder the scriptures, read through church manuals and Ensign articles, reflect on how they relate to my life, and asking questions and then looking for the answers in the scriptures, allows the Lord to speak to me and reveal the things he has to tell me.
Quote by Elder Eyring: "We read words and we may get ideas.  We study and we may discover patterns and connections in scripture.  But when we ponder, we invite revelation by the spirit.  Pondering, to me, is the thinking and the praying I do after reading and studying in the scriptures carefully"
            When I read the scriptures hurriedly and close the book, I have not allowed time to let the words sink in.  There is no time for revelation to come.  Sometimes even studying the same scripture for a week will allow you to really understand it and do an in depth study with cross referencing and searching other topics related to that scripture. 
            The second thing we can do is pray to Him. We must pray daily, sometimes multiple times throughout the day, for us to receive direction and to know how to serve.  Elder Eyring says "As the humble servants of the Savior, we should pray for the manifestations of the Holy Ghost to come to us in our service and to those we serve.  Humble prayer to our Heavenly Father, in deep faith in Jesus Christ, is essential to qualify us for the companionship of the Holy Ghost."
            *Prayer is essential to get us through this earthly journey.  I have relied heavily on prayer throughout my trials this past year. *Tell about Kera's diagnosis.  When Kera was diagnosed I would plead with my father in heaven to help me  Throughout the process, from the very beginning until Kera passed away, and especially now that she is apart from me, I kneel in prayer often, and try to listen to the Lord and what his will is for me each day
            Pres. Eyring said "A morning prayer and an early search in the scriptures to know what we should do for the Lord can set the course of a day.  We can know which task, of all those we might choose, matters most to God, and therefore to us.  I have learned such a prayer is always answered if we ask and ponder with childlike submission, ready to act without delay to perform even the most humble service".   That phrase "without delay" sticks out to me.  There are have been times when I have been prompted to do a service for someone, or to call a friend, or to act quickly to help someone, and sometimes I have hesitated.  I know it's always best to act quickly without delay.  If we delay that service, we may miss out on a great opportunity.  The Lord may be using us as an answer to someone else's prayer, or as a ministering angel to someone else, and if we delay our action, not only to we rob ourselves of the blessings, but we may miss a real need to change someone else's life or circumstance. 
            Another way we can serve the Lord daily is by magnifying the callings that we have been given.  I have served in many different callings.  Two years ago I was called to serve as the first counselor in the Young Women's.  I had spent several years serving in the primary, and my children were all currently still in primary, so this call was foreign to me at first.  At first I wondered why I was called to Young Women's.  I did not have a daughter in the program, I didn't know if the girls related to me, and the girls had many other amazing leaders.  What was I doing there?  I got my answer after my daughter passed away and I relied heavily on the young women and the leaders to help me get through such a difficult loss.  I feel like each one of them have touched my life in their own way.  They all have attributes that I admire.  I know that they can grow by seeing me deal with my own trials and by bearing my testimony to them about what I have gone through. 
            President Monson said this of magnifying our callings.  "What does it mean to magnify your calling?  It means to build it up in dignity...to enlarge and strengthen it to let the light of heaven shine through it to the view of other men.  And how does one magnify a calling? Simply by performing the service that pertains to it."  I saw firsthand ward members who magnified their callings as they served our family in time of need.  They went above and beyond for us.
            Throughout our family's trial with our daughter's sickness and with her passing, we were able to be the recipients of several acts of service from friends near and far.  Many friends who reside in this stake have done countless acts of service for us.  I have one friend in particular who is a true example to me of selfless service.  She came to my house countless times to bring gifts to my children on birthdays, when one of my children was sick, or on a special day when I didn't always have the time to go out and get balloons or special things for them, she would bring the balloons and the cards and the little treats. She knew from her own experience what it was like to have a child diagnosed with cancer and the uncertainty and sheer terror that comes along with that. This friend came by several times a week to visit Kera and play games with her and my 5 year old when Kera was unable to be in school and would often times feel isolated from being homebound as her body had lost the ability to walk, and to talk, and do many of the things she was once able to do.   My faithful friend brought crafts for her to keep busy with.  She made jewelry with her, and even helped Kera make me this special bracelet that I wear often and which means the world to me now.  She patiently helped her string each bead, at this point Kera was unable to speak, and she would ask her yes or no on each bead.  She knew how important it was to Kera to make the bracelet just right, with each bead in a certain order.  This friend still reaches out to me and sends me little cards and messages, and it always seems to be on hard days when I am going through a particularly tough time.   I know she is guided by her Heavenly Father to do these kind acts of service, and she is a ministering angel to me and to so many other people around her. 
I cannot express enough, my gratitude to my family and friends and relief society sisters who came to clean my house once a week, and brought in dinners, who stopped by to visit with bunnies to entertain Kera, or games, or whatever they could think of to bring that may put a smile on her face that day, and teachers who came to our home to teach Kera when she could no longer be at school. Her teachers and schoolmates organized a easter basket donation, and her teachers came with huge baskets of gifts and games and toys for our family.  On Easter morning we woke up to our front yard literally covered with plastic easter eggs and toys from thoughtful neighbors who knew this would possibly be Kera's last Easter with us. Each of these people answered the call to serve God by serving us. I learned of the priceless value of service through each of these kind acts.  They answered the call to serve when I didn't know how I could make it through.  My own mother in law came and stayed with us for 6 months and worked tirelessly to help us and to be there for my boys when I had to dedicate most of my time to Kera. I have promised myself after viewing such an outpouring of love to be more diligent in serving others.  Service is about looking outside of oneself and our own problems and seeing who may be needing our help.  If we kneel in prayer and ask our Heavenly Father who we can serve that day, He will answer us and guide us to whom we can serve. 
            President Eyring says "In the hardest trials, as long as you have the power to pray, you can ask a loving God "Please let me serve, this day.  It doesn't matter to me how few things I may be able to do.  Just let me know what I can do.  I will obey this day I know that I can with thy help."
He says "By serving Him this day, you will come to know Him better.  You will feel his love and appreciation.  You would not want to delay receiving that blessing.  And feeling His love will draw you back to His service, wiping away both complacency and discouragement. 
The call to serve God is not always a call to serve others, although that is very important.  We serve God by worshipping Him at church, by taking the sacrament and renewing our covenants with Him.  We serve Him by keeping His commandments and by trusting in His plan for us. We commit ourselves to do better.  We repent of our sins and we commit to go forward in faith.  I have had many friends tell me how impressed they are with my ability to go on in faith after my daughter's passing.  They say they are amazed at my strength and my testimony.  I have to say that from the very beginning, soon after we learned of Kera's diagnosis, after the shock wore off, I had to make a choice.  I could either rely on my Heavenly Father and completely put my trust in Him, or I could become angry and bitter.  I chose to embrace God.  I knew this was a huge trial and I didn't know if I could bare it, but I learned to rely on the Lord when I didn't think I could go on.  I felt my faith in Him increase the more I put my trust in Him.  That is how God works.  When we show that we are faithful, we are given more strength.  When we bare testimony of Him, our faith is strengthened.  There were several tears and I pleaded with the Lord to remove Kera's tumor, but if it be His will.  I did not pray this way at first.  I told the Lord that I would not be able to handle it if Kera didn't make it through.  I told him he better not take her from me, or I would not be able to continue on, but I had 10 1/2 months to learn how to pray.  I learned why I needed to pray if it be His will.   I learned that God knows my daughter very well.  He knew long before she came here to Earth.  I learned to accept that He knew best.  I learned to trust in the plan of salvation.  I cherish the fact that my husband and I were sealed together in God's Holy temple and our children were sealed to us and we will live together for eternity.  My daughter will be reunited with me and I will get to raise her from the age she passed away.  Nothing will be taken from me.  I know that.  I am grateful for that knowledge and that faith.  Before   Kera passed away she was able to be given her patriarchal blessing from President Bennett.  What a blessing and a comfort that is to me that has helped me to keep my faith strong. 
-President Eyring said this about trials:
            "On many days, doing what matters most will not be easy.  It is not supposed to be.  God's purpose in creation was to let us prove ourselves.  The plan was explained to us in the spirit world before we were born.  We were valiant enough there to qualify for the opportunity to choose against temptation here to prepare for eternal life, the greatest of all the gifts of God.  We rejoiced to know the test would be one of faithful obedience even when it would not be easy.  And we will prove them herewith, to see if they will do all things whatsoever the Lord their God shall command them. Hard as we knew the test would be, we felt joy because we had confidence that we could pass it.  Our confidence came from knowing that Jesus Christ would come in to the world as our Savior.  He would make it possible for us to be cleansed of our sins by qualifying for the effects of His atonement.  We knew that the Savior would draw us to Him and would have the power to help us when the test would be hard and the temptation to procrastinate great."
            I know my daughter Kera is serving a mission on the other side of the veil.  Just like all parents who have to send their child away on a mission, it is with mixed emotions.  I know she is learning many important lessons and she has so many important tasks to accomplish.  Just as the Lord is hastening his work here, he is hastening it on the other side of the veil.  I think of Kera serving her mission and although I would give anything for a phone call on mother's day, or an 18 month release, I know that I will get to see her and be with her again for eternity. 
Kera's service is inspiring me to be a better person here.  I have a lot of work to do as well.  I need to prepare my three sons for their missions.  I need to continue to search the scriptures diligently and pray fervently for the Lord's guidance.  I need to find opportunities to serve those around me and develop christ-like charity.  I am being molded into the person that the Lord wants me to be.  The process is often a painful one.  I am being put into the refiner's fire.  It will be a long and difficult journey. But I know that I will be successful because I have the most beautiful and noble angel cheering for me and my family.  I know that my Heavenly Father and the Savior Jesus Christ live and they love me and are cheering me on as well.  I know that each of us are given our own trials to bare.  But I know that if we turn to God and serve Him each and every day without delay, we will return to live with Him again.  He will say well done, thou good and faithful servant, in the name of Jesus Christ Amen. 


Friday, September 5, 2014

3 months down

I have been feeling the need to post in my blog a lot lately.  I cannot express how much this hurts to have my daughter apart from me.  She is such a part of me, and without her here I feel empty inside. There have been many instances since her passing that I have felt her presence with me.  I felt her while we were in Texas visiting Dave's family.  I saw the most beautiful yellow and black butterflies at times when I knew she would want to be with us, like when we went swimming as a family, and while at the zoo when Ryder and I were walking down the path and I thought of how much I wished she were there, and I looked up and a beautiful butterfly fly right by me and went right next to where Ryder was walking.  One day while out in my garden, which is often the place I do a lot of my crying, I would see butterflies and know she was there.  She sends them to me as a comfort I'm sure.  While I was at girls camp at Heber Valley, which was simply one of the most sacred and spiritual places on this earth, outside of the temple and Kera's room, I saw a million butterflies all over the campsite.
I felt her presence very strongly during the week she passed away while Jacob was getting ready to receive the priesthood.  I felt her and still feel her spirit when I go into her bedroom.  I have felt her spirit every time I have visited the temple, especially when we went to the Jordan River temple to do baptisms for the dead at our family reunion.  My dad works in the baptistry and all of the cousins were there to do baptisms.  When we walked into the room to wait to do baptisms, the organist was playing the song Lilies of the Field, the song that was sung at Kera's funeral.  I knew that was her telling me she was there.  
I love these tender mercies of the Lord.  I am grateful that he allows her to visit her family during these times.  I love feeling her presence, but I wish I had one more hug, one more time to see her smile, one more late night talk in her room, one more time to see her off to school.  I want my daughter back.  I hate this.  I don't want to be patient.  I know I have so many great things waiting for me when I see her again.  But unfortunately this life is all I know.  It's hard to wait.  I feel so strongly that Kera is on a mission.  Just like any parent who has a child serving a mission for the church, I am so proud of the work she is doing, the success she must be having bringing new spirits into the light of the gospel.  Helping others and being a ministering angel.  But that doesn't mean you do not miss having them with you.  Seeing their face and talking to them in person.  Kera would have started 4th grade this year.  Not shopping for new school clothes, getting her all ready for the first day, buying a new backback, taking her picture on that first day, not seeing her walk her little brother onto the bus, that was a killer.
Last weekend my niece Cora, my brothers daughter, passed away also.  Cora was a twin and her sister died in the womb.  When she was born she had fluid on her brain and was born with just a brain stem.  She has been in a wheelchair and unable to do many basic functions.  Although she requires 24 hour care, her family views her as the greatest blessing in their home and her spirit is very strong.  When she smiles it is priceless. They are already missing her greatly. What a trial our families have been through.  Tonight is the viewing and tomorrow is the funeral.  I am a bit terrified to go through this again.  I know it will bring up many hard memories.
I also have been asked to speak in stake conference on Sunday.  I know the stake president asked me to speak for a reason, there are many things I can share about my journey that may help others.  I just sometimes feel overwhelmed by everything I am asked to go through.  I know my Kera is and has been a wonderful light to so many.  I sometimes wonder if I can measure up.  Sometimes these burdens feel heavier than I can bare.  That is why my only choice is to put them back on my father in heaven.  I have no way to do it alone.  My faith and testimony are all I have.  It will have to be enough.
I hope I can convey the feelings in my heart and share my message on Sunday in a clear way.  I have just started to write my outline.  Yikes, I better get writing. I'm praying that I can get through my talk and not bawl in front of the entire stake!

Tuesday, June 3, 2014

Our journey has not ended

June 1, 2014
Today is Sunday.  It has been one week since my sweet angel passed away.  The last month of Kera's life was a whirlwind of constant care, a decline her abilities which in turn made her extremely frustrated, and waiting for the inevitable to happen. We started on home hospice care on April 23rd. Kera was needing constant care at this point since she was no longer able to walk or stand on her own.  She was needing help communicating since she was unable to talk anymore either. Our principal at the school was able to quickly contact the district special services dept to get Kera an Ipad that had a special program on it to help her communicate through pictures, words, and vocabulary.  It was very helpful and is what we used the last few months of her life, and even up until the week before she passed away. Not being able to talk has been extremely frustrating to her, and she has struggled with not being able to do basic functions.  She was still eating somewhat at this point, but it was very difficult because her teeth would clench together and I had to try to pry them open to even get a baby sized spoon in her mouth. This was also imaginably very frustrating as well. She still wanted to eat and she told me sometimes that she was just so hungry. :(
When the nurse started coming in, she came about twice a week at first, and an aide came three times a week to help Kera bathe. One night in early May we had a scare where she was choking on some bits of food, and her heart rate went way up and she was in distress.  After that scare we started having the nurse come in every day. It was getting very difficult at night to keep an eye on her because she was constantly thirsty and always needing something to drink, or she would just need to adjust herself because she would slip down in the recliner and need to scoot back up.  She didn't have the strength to pull herself up either.  Hospice brought us a hospital bed right after we signed up with them, and that helped keep her propped up and more comfortable.  She couldn't lay flat anymore because it made her too dizzy.  Once Kera's right hand started to get weak as well was when kera had just had enough.  Once she was unable to ring her bell I was no longer able to let her sleep alone with the monitor on in her room. She had no way yo signal me if she needed help.  We were fortunate enough to have two hospice csn's come in three nights a week for about 6  or 7 hours and stay with kera at night.  They both ended up being wonderful, and one of them in particular said she was prompted to come and take the job.  Her name was Katie and she had an immediate connection to Kera and our family. She said she felt the spirit very strongly while she was sitting with her, and at one point in the night Kera reached her hand out and she just sat there holding her hand and comforting her. The Friday before she passed away her school class had an economics fair which she really wanted to go to.  She was in pretty poor shape, but it was important for her to go, and I'm glad she did.  She got to be in her class, see her teachers and friends, and be a part of her class for just a little while.  I think it was also good for the kids in her class to see her and even though she was in her wheelchair and couldn't speak anymore, they got the opportunity to be with her one last time.
I'm so grateful to the hospice social worker the csn's for being able to help our family so I could get some sleep at night and so I would be refreshed to care for her in the day.  We also had mine and Dave's sister come stay a night, and my mom as well. I think they will all look back and feel it was a blessing that they got to spend that special one on one time with her.
One of the most special experiences we were able to have in the last few weeks of Kera's life was to have her get her patriarchal blessing.  This is a blessing that is offered by someone who is called to act in our Heavenly Father's name, and who receives knowledge about us and our Heavenly Father's plan for our life.  It was the most spiritual moment of my life so far.  The blessings that were promised to Kera and the explanation of His plan for her has given me so much comfort where I felt that I could accept Kera's diagnosis and eventual outcome for her and be able to understand that it is Heavenly Father's plan to be here on this Earth for only 9 years, and that the rest of her work will be on the other side and that our family will be reunited and I will get to raise her because of the Savior and his gift of the atonement so that we can all be resurrected one day. These concepts may be foreign to some of you, and I hope that if you have been touched by Kera's story and want to know more about the plan of salvation, that you will study more about this topic.  You learn about it at www.mormon.org/plan-of-salvation.   The knowledge that I have that our family will be reunited and can be together as an eternal family is the only way I am able to deal with Kera's death and have some peace.

It is Tuesday now and I'm still working on finishing this blog entry. It is difficult for me to be here writing about Kera's passing.  We have had so so many tender mercies happen leading up to Kera's passing and even throughout the week afterwards there has been an increase in the spirit felt in our home.  Jacob felt Kera's loving arms around him when he gave her eulogy.  He knows she was happy with the words he shared in tribute to his sister.  The fact that he was willing to talk and asked us if he could talk at her funeral shows his bravery and character.  He also bore his testimony at church on Sunday, and shared his thoughts about our family being blessed to have her spirit with him and us throughout the week.  He bore his testimony about the Savior and that he knew Joseph Smith restored our church and was given special keys of the priesthood.  He also turned 12 on Thursday and In our church when you turn 12 you receive the keys of the aaronic priesthood and boys this age are able to pass the sacrament on Sunday and do other special and important things in our church. At first we worried about the timing of Kera's passing, and Jacob's birthday and then receiving the priesthood, but I feel like it all came together like it was supposed to, and Kera was there when Jacob was being set apart as a deacon in the priesthood, I felt her spirit so strong and Dave mentioned her name several times in Jacob's ordination.
The loss of my daughter will never be filled until I am reunited with her again, but I know I can feel her little spirit at different times in my life, and this will helpfully make the sting of losing her a little bit easier to handle.  It is such an odd feeling, this physical loss of her in our family.  I want more than anything to see her again and spend another day with her, but I know if I had one day, I would want another day and then another.   It would never be enough.  Losing and burying your child is the hardest thing to suffer through in the whole world.  It is indescribable.  I just have to wait for the day when I see her again, and pray for the gift of the Holy Ghost to comfort me and help me get through this. I know how special Kera is to her Heavenly Father.  He wants us to know that he loves us and wants to help us get through this.
Just a note to everyone that has sent flowers, gifts, words of encouragement, all of those kindnesses have meant so much to our family.  I am grateful to have this blog to keep as a record of our family's journey. It has helped me to write my feelings down and get them out.  I was so fortunate to have a daughter as wonderful, kind, spiritual, generous, thoughtful, who radiated beauty, and who's heart is just about as pure as the Savior's. I was lucky enough to be here mother for 9 years here on earth, and can't wait until the time when I will be able to continue raising her.
As I mentioned in the beginning, this journey is not over yet.  The passing of Kera has closed one door, but now we are on to another phase in the process.  There will be continual struggles and heartaches, but I am grateful for the peace and comfort that I have felt throughout this process, and good friends and family to lean on during those hard times, and I know there will be many more of those hard times and days when I will feel like I cannot take the pain anymore.  I will need to be strong and continue to lean on the Lord and my faith to get me through, just as I have done so far.

Sunday, April 20, 2014

Because of Him

First off, before I start into my entry and update on the past few weeks, I would like to share a link to an article regarding new findings on DIPG.   It makes me happy to see that some research is finally being done to study this tumor and get more information so that one day, and hopefully not in the too distant future, there will be answers, there will be options for children suffering from this dreadful disease, and there will be a possible cure.  Here is the link to the article.  As a side note, if you are wondering what all the talk is about #kerascrusaders and the facebook site started by Brian Phirst, who's son was diagnosed with cancer, it is about raising awareness for childhood cancer.  Kerascrusaders is the team name we picked for her. It is a virtual run that anyone can do who does any kind of aerobic activity and wants to post their miles or minutes for children to support them.  There are no monetary donations regarding this particular event, just the hope that our children will be cared for and receive much needed funding for research into these deadly cancers.  I know that with the Gabriella Miller kids first research that was approved and signed by President Obama, events like this and other forms of raising awareness really make a difference!!  If you want to get involved with the fb event and haven't already, you can send me a msg or fb msg me and I can help you get involved.  I am passionate about changing the current status of DIPG from 0 % survivers to curable!!
Here's the link to the article:

http://www.curebraincancer.org.au/news/1044/multiple-breakthroughs-in-childhood-brain-cancer#.U0T0__ViBoI.facebook

Here's another you tube clip that gives more facts and insights into DIPG.  It's around 7 minutes, but for those of you who have wanted to know more about the type of tumor Kera has and the statistics, it does a good job explaining it. I haven't shared a whole lot of information about Kera's tumor on this blog, I guess mainly because it is such a devastating tumor, and I don't like to dwell on the negative stats and devastation regarding this disease.  I haven't wanted others to lose hope for Kera's fight. But this is the reality of the disease.  I also know that there is always hope.  There are always miracles.  God has his hand in Kera's life, and if she is to live here longer on Earth, then she will.  I am grateful for finding a woman who has been studying natural and eastern medicines for 20 years who is currently helping to treat Kera.  I feel like if nothing else, she has given me hope again.  I have decided to stop the chemo and go the natural route.  The doctors say there is no cure, there is no hope, there is no chance of survival, but there is always hope.  Nevertheless, there does need to be more done to fight pediatric brain cancer.  Here is the link:

http://www.youtube.com/watch?v=zwYYtw1sgow&sns=fb

Now for the update. Warning, this isn't going to be sugar coated.  I am going to state the facts, and those aren't always easy to hear. These past few months since late January when Kera's symptoms started to return have been SO ROUGH!!  Each week there are new symptoms, and each week there is less mobility, less talking, and more of her body giving out.  Right now Kera is not able to speak much at all.  She tries to talk, but it's very hard to understand her at this point.  She is mostly communicating by writing.  I hope and pray that her vision remains intact, as well as the use of her right hand, as I cannot imagine if she is unable to talk and see or write.  I don't want her to be unable to communicate her thoughts to me.  I ask for everyone's prayers that she remains able to communicate with us somehow. She has also recently in the past week or so, stopped trying to walk.  Her trunk and upper body have gotten weaker, and she isn't much less steady. Her legs still have some strength to them, but because her body in general is weak, and she can't balance on her own, she has stopped being able to walk.  I want more than anything to believe that she will be able to do these things again here in this life.  I know if she is not able to do so here, she will in the next life.  I also know that because of our Savior and the resurrection, her body will be restored to her and she will run and jump, talk, walk, and do back flips and tumble just as perfectly as she used to. I can't wait to see her do all of that again.
Even through all of the deterioration of her physical abilities, her mind is just as sharp as ever.  She enjoys playing games, and most of the time still wins them all!  I was so happy to spend a wonderful Easter Sunday with her today.  Friday afternoon her teachers from school brought over some amazing Easter baskets (laundry basket sized) filled with toys, games, puzzles, huge stuffed animals, candy and all sorts of great things.  They had a basket filled for each kid, plus a family basket and one for Dave and I with gift cards and money.  Thanks to all of the kids and teachers and one classmate's mom in particular who brought in the majority of the items.  Our kids were all overjoyed.  Then this morning the kids woke up to a yard FILLED with Easter eggs, toys and goodies.  There were well over 300 eggs on our lawn, thanks to some amazing neighbors of ours.  ;) The kids went out this morning to collect the eggs, and couldn't finish getting it all before we went to church.  It took them two more trips to collect all of them.  We also had Dave's mom fly in from Texas to stay with us. She was here for 6 months when Kera was diagnosed.  She was home for 3 months, and she is nice enough to come back. I'm so immensely grateful that she's here to help us out, as I've been so overwhelmed by caring for Kera and her needs, let alone 3 other boys, one being under 3!!  We spent an Easter dinner with Ann and my parents, played some games with them, and had an enjoyable day.  As I said, Kera is still able to keep up with us at the games.  She also has been having her teachers (she has two this year) come over once a week to give her hour long lessons.  she wasn't able to have them come for lessons this week, and she told me she wanted to keep them coming because she didn't want it to affect her grades.  Always the scholarly student.  :)  I told her she would be just fine.  Her teachers said they could just come for a little while and share a video with her or read a book, whatever she wants.
Seeing Kera's body give out on her has been so hard to watch.  She told me today that this might be her last Easter.  I asked her what she thought about that.  She said she has been feeling so sick and having such a hard time lately that she's just not sure.  She said she thinks she will get better though.  I hugged her and teared up at my brave little fighter.  she also told Dave and I a few weeks ago when she was still able to talk more that she didn't want to be here if she was going to be unable to talk and walk and do everything she used to do.  She said it was just too hard.  She also said that she wasn't ready to go to heaven yet.  I honestly don't think I'm ready for that either, but I also don't want to see her suffering or unhappy.
I have been diligently applying essential oils and giving her herbal pills and things that have been helpful in fighting cancer.  I know that they have been shown to help, and I want to believe that they can help Kera, but this is such an aggressive tumor.  It is a beast, and I don't know if I have the tools to fight it.  I think that God is the only one who can make it go away.
With it being Easter, it brings me such peace to know that the Savior suffered and atoned for each one of us.  He was crucified and resurrected three days later.  I know we will all be resurrected again.  I saw a video at church today, and I'm sure many of you may have seen it since it's been all over social media.  It is the title of my post #becauseofhim .  Because of Christ I can get up each morning and fight another day.  Because of Him I know my family will be sealed together for eternity.  Because of Him, we can be forgiven, be reunited with loved ones, be given strength to face our trials, have the courage to stand up for what's right, and so much more.  I will post the link to the video here.  For those that haven't seen it, and even for those that have, it's one that can be watched over and over.
I am so grateful for this Easter Sunday and for the knowledge that I have that our Savior lives.  He lived and died and was resurrected and so will we all.  All because of Him.

https://www.youtube.com/watch?v=_S3TI4bYerU

Thanks to everyone for your continued thoughts and prayers on our family's behalf.  Please keep them coming!! :)

Thursday, April 3, 2014

Highs and lows

With this illness there are so many highs and lows that you feel each day that it can be SO exhausting!!  Just the caring for Kera alone right now is a full time job.  She currently has severe weakness on the left side of her body, which affects her movement of her left leg, arm and facial muscles.  She has been doing physical therapy and occupational therapy for about a month now to help her strengthen her muscles that aren't being used and to help to train her how to walk better, and  get more function in her left arm and hand.  Her muscle tone is very low and has what they call spastisity(sp?) in her muscles so they automatically want to be tight and fingers curled, arm bent, knee locked, etc.
She enjoys using the adaptive tricycle during physical therapy the most.  I want to get one for her to use at home, especially once the weather gets nicer when we can ride outside.  But guess how much one of those will cost retail?  About $3500!!  I still have to look into it some more and see if our insurance will cover something like that.  If anyone knows about these bikes and wants to give me some direction here that would be wonderful. ;) We are also going to have an assessment done on Monday for speech therapy to see if we can get some help with her learning to talk more clearly and to have an easier time eating. Right now it's very difficult to understand much of what she is saying, and I'm constantly trying to decipher what she is trying to tell me.  I've never been good at reading lips, and it's frustrating to both Kera and I when she can't tell me what she is saying and I can't understand.  She's also having more trouble eating and swallowing because her mouth muscles are weak, and she can only open her mouth so far, so of course brushing her teeth is difficult too.
One of the first things they did at physical therapy and OT was to order an ankle and hand brace for her to wear.  The ankle brace, DAFO, she wears all day, and it does help her foot and ankle stay in position and if she isn't wearing it her toes will curl up and her ankle will turn her foot in.  So I'm grateful for the brace which does help some.  The hand brace she wears all day and keeps her hand stay more open.  She wears something under the hand brace that keeps her fingers open as well.  She has been walking better with the brace, but her balance seems to be worsening, so while her ankle is supported, she needs me to hold onto her while she walks because she will easily lose her balance and fall.  This is so hard to watch.  I hate the worsening symptoms and she hates being so dependent on others to do simple tasks like getting dressed, walking to the bathroom, and getting up and down stairs, etc.  These are all so difficult.  Of course I have three other kids, so I try to remind her to be patient with me, but she often gets upset because she will be sitting on the floor because she has lost her balance and fallen, and sometimes if I'm not right there by her I don't hear her calling me because she has a hard time yelling ,or talking loud.  Can you imagine it??  It's not pretty.  I wish more than anything that she didn't have to go through all of this, but I also know that it is teaching me patience, which has never been a strength of mine.  I am constantly praying that I can get through each day without losing my mind!!!  My boys are usually pretty good about waiting until I help Kera to help them with things they need.  Except of course Ryder who is still little.  Not so little though, he turns 3 this month on the 22nd!!
Like I said in my last post, Jacob, who will be 12 in May, struggles with feeling invisible, and often he feels like Kera is getting all of the attention, whether it's by getting to go to lunch with me, (as we are often traveling back and forth to therapy or to a new lady in Salt Lake City that practices natural medicines that I am taking her to see once a week now. More on that in a minute) getting a home visit from our principal or her teachers at school, getting a package or cards in the mail, or just overall being asked how Kera is doing.  He said nobody ever asks him how he is doing.  I really have been trying to make an effort to spend more time with him, but my time is often at a premium and I'm physically wiped out by the end of the day. I have been reading the Michael Vey series with him though, which we both enjoy.  If anyone wants to do an act of kindness, a card or letter or just extra attention paid to him or Michael would go a long way!
There are two new things that we are trying that I feel will be very helpful, and which have given us all much needed renewal of hope.  One is a book and CD that my mother in law was given from a friend of her aunt and uncle in Texas who went through stage 4 cancer and beat it by doing guided imagery.  He wrote a book for children that is a story of a little boy and girl who play in the woods and the boy gets bit by a poisonous tree and gets sick. There are alpha waves that are embedded in the book and in the CD, and she is supposed to listen to the CD while she is sleeping and the left brain works to heal itself.  I'm also visiting the natural medicine woman who has studied eastern Chinese medicines and has had a lot of success with helping people who have cancer or strokes, or any serious sicknesses.  At this point I will try anything that is not harmful or too invasive.  Both of these things I have felt more confident about and more hopeful about than radiation, which they said would work temporarily and the tumor would grow again, which it did.  Or chemo, which they said from the start hasn't shown to be effective at all in shrinking this kind of tumor.   I've learned through this whole process that doctors do not know everything.  They are doing the best they can, but they do not have all the answers, and really they have no answers with this type of tumor.  I know that God has put plants and herbs here on the Earth for our benefit and to help heal these kinds of sicknesses.  I pray that Kera can get some relief from her symptoms and that we can all feel peaceful and be given comfort during this journey.

just waiting

This is kera typing. I just had to take some medicine you put under your tongue and it tasted like hot sauce. (It's called Cayanne and it's supposed to improve her circulation says mom). It was my first time trying it and it is hot. The reason I called this title just waiting is because I am waiting for a lot of things. I am waiting for my cheeks to go down because even though I am off staiords my checks are still chubby and I am waiting for those to go down. I am also waiting for Easter and a Easter egg hunt for make a wish kids on the 12th. I am also waiting for  this Sunday because my grandma and grandpa and aunt and uncle and cousins are coming to my house. my grandma that lives in Texas sent me a book that helps me think positive and that can make my brain tumor go away. I really want it gone.
kera