The End and a New Beginning

On Saturday Josh took a turn for the worse.  He began to slip in and out of consciousness.  We called our Bishop and Stake President and they came.  He didn't seem to know them but then our Stake President put his hands on Josh and gave him a blessing.  At the end Josh clearly said Amen and Thank you.  Those were his last words.  He lingered for one more day so our family could quietly spend the Sabbath together and then this morning at 10:30 he left us.  He fought hard for every breath and never gave up.  It was very hard to see him struggle and broke my heart but I could not be prouder of him.   Within minutes of his passing the kids in the neighborhood heard and came.  What a joyous site to see his body finally resting and 8 or 9 teenagers standing around him quietly visiting.  When the adults came in they all went to the kitchen and polished off 2 containers of ice cream and every popsicle we had!  How Josh would have loved that.

We now look to the future.  Joshua is were he belongs and no longer hurts.  I know he is at peace and I am so grateful to know that I will see him again.  We are having a funeral on Saturday at 10:30 and I will post the address and info later.  We are asking everyone to come.  This is a day for family and friends and we want you all to be a part of it.  If you can come we have plenty of room for you to stay.  Our wonderful ward family has offered their homes and we have room for everyone, please let me know.
We are grateful to know that Heavenly Father loves us.  He loves Josh and I know he is proud of him.  I could not let him go if did not know that he was loved and is being cared for by his Heavenly Father.  He rests with his sister Micah and other family.  I have longed for my children to meet my father and today Joshua did.  We are peaceful and sad and grateful all at the same time.  We ask for continued prayers and welcome all to come visit.  We love you.  Joshua loved you too.

Waiting

Time is standing still.  Hospice sent a doctor to examine Josh because the nurse is seeing conflicting signals.  He shows signs of decline but doesn't really change.  Parts of his body are dying but his heart beats on.  The doctor shrugged her shoulders and said he is young and has a strong heart.  It is hard now, he suffers.  He is sick in the morning and sleeps all day.  He gets up for food because we make him to keep him from getting sores but then goes back to sleep.  When he is awake he gets restless and cant figure out what he wants.  Yesterday he cried himself to sleep in the late afternoon because he could not settle down.  
The doctor said it right, he has a strong heart.  He is still making a difference for others and I am grateful for his strength.  It breaks my heart to see him suffer but I know that Heavenly Father knows best and I must be patient.  His favorite thing now is on Sunday when the priests (that is the boys his age) come over for their lesson to our house and bring us the sacrament.  He can't always stay awake but he musters up the strength for that and loves it.  What wonderful young men they are to care for him and keep him part of the group.
We are amazed by the support we have been shown.  So many people have cared for our family and are trying to help us.  We don't even know how to say thank you anymore, it seems so little for all we have been given.  I am humbled and want to remember all of this. Thank you.
We don't know what tomorrow will bring but we will follow Joshua's lead and hold him tight for as long as we can.

Changing Times

Josh is beginning to drift away.  He sleeps till noon and then sits for about an hour and then goes back to sleep.  If we are lucky we get a couple of hours at dinner time and then he is back to sleep.  He can no longer stand without assistance.  Activities out of the house are not possible now and we are asking that if you want to visit please call first to see how he is doing.   He still wants to see people but we don't want to stress him now.  We think he still has a little time because his vitals are stable and he is still eating but that time is short and we will keep you posted as it moves forward.

We are grateful for all the fun we have had and the memories we have made in the last 2 months.  We feel the love of so many people and especially the love of our Heavenly Father.  We are as ready as we can be to begin this new part of the journey.  We plan to take it one day at a time and let Josh lead us.  We have talked to him about the next steps and given him our blessing to go and we are listening to the spirit for guidance.  I know that our Savior is close as we move forward. 

I have a testimony that God loves our family and has a plan for Joshua.  I am so grateful to be his mother and walk with him on his journey.  I will never be the same but I pray to be better because of him.  I also pray that the many people he continues to touch will feel the same and come closer to Heavenly Father.  In a world of hate and anger I want everyone to learn to love like Joshua does, simple and pure.

Please come visit if you can and we will be glad to see you.  480-720-9856

Highs and Plateaus

     Well I am not sure what to say today.  So much has happened but nothing has changed.  We have had some really high moments in the last several weeks.  We went on a helicopter ride and horseback riding and even got to ride in a side car with the coolest bikers ever to Antelope Island.  We have been to 2 more temples to do baptisms (Logan and Provo City Center).  We loved everything we have done and it has been amazing.  The highlight for Josh was a visit from a member of the seventy, for our friends that don't belong to our church that is a general authority.  He was sent by our prophet to visit our family and Joshua.  As a mother I can only say I am proud because I could see how impressed he was with Joshua and his love of the gospel.  It was a powerful visit and we were left with a strong sense of love and support from our church.  He gave Josh and Gordon and Ted ties.  They are a solid color and have what appear to be dots on them.  When you look closer they have panda bears all over them.  Elder Sabin says no one can be unhappy with a panda.
     On the other side of the coin we are unchanged healthwise.  He is very tired and confused sometimes.  He is just going day by day.  We have increased his medicine to help with some pain he is having.  His legs hurt at night and he is getting more anxious so we added meds to help with both and he is doing well.
     I sometimes wonder as his mother about the purpose of this time.  I don't want him to suffer and I know he is ready but I see the work he is doing here now.  He rarely goes anywhere without touching someone.  I see that others still need him and so do we so I am grateful for this time.  I am grateful for the tender mercies of the Lord, I see how all this is all working for a purpose so I am trying to be patient and see where it leads us.  We are sooo grateful for the friends we are making and have already around us.  We have been getting letters and gifts for Josh from around the world from our wonderful biker friends and they make me cry.  Josh loves it and in the end that is all that really matters.  Please go hug your families and do something they want to do that you think you don't have time for.  As Josh would say - Have At It!

Changes and Explanations

Well, I am sad to post today.  Josh has begun declining.  He is getting confused now and very tired and the swelling from the steroids is extreme.  I want to explain some things.  We are still doing activities and he is still having fun but there are some things I want to say.  He is losing his affect.  That means that he doesn't always smile or respond appropriately and it is hard to tell if he is enjoying the activity but I promise he is.  A good example is Ragnar. Our friends ran a 200 mile relay race and dedicated it to Josh. We met them at the finish line and when they came in he got to cross the finish line with them.   He loved it but didn't respond much.  But when we helped him stand and cross the finish line his smile was wide and my eyes were filled with tears.  It was a good day and a special time for him. He is struggling now to focus on things but still has goals and we are just moving forward day by day.  He doesn't get up much before 11am but the best time to visit is before 3, that is when he is the most alert.  Also, small groups are best now he can't handle too much at once. 
      We are making each day count and want you to know how much you all mean to him and us.  Ted asked me how much longer Josh had and I told him we don't know but think it is getting short.  I feel such peace and we are just praying now that he doesn't suffer and can be happy.  We want to let you know and ask for you to pray for us to have strength and be strong enough to do what we need to.  Josh said he is a little afraid of what is coming and I told him it was like a little one at the pool.  Dad is standing in the water and telling them to jump but they are scared to do it.  When they finally jump it is wonderful and they beg to do it again.  I told him not to be afraid to jump and his Heavenly Father would catch him.  He fell asleep after that and I think it helped.  I am grateful to find the words when I need them and know that we are being guided everyday.  This road is long and hard but I am so grateful we don't walk it alone.

Pictures and Memories

This is what you look like after a wonderful day meeting new friends and having fun!  Josh loved going to the Hill Air Force Base Fire Training.

He Made great friends and that hat he is wearing was a gift, all the firefighters signed it!

He loved being in the truck and even got to work a water cannon on another truck!

 Yes he is in that basket, way up high.  As I watched I said to a lady on the ground "you could never get me up there".  Apparently he told the firefighter in the basket at the same time "you could never get my mom up here".  Hahaha, we do think alike.

The amazing thing about today was not how much fun he had, or the cool toys he got to play with, or even what we saw but it was the people.  The people who made it happen and the love they showed us.  They are so wonderful.  I know it was a lot of work to have us and they didn't even know our family but they heard about Josh and jumped at the chance to spend time with him.  We are amazed at how much they did and how great it was.  I find myself saying Thank you again and knowing how inadequate it really is for all we are being given.  I know they will be blessed like we were blessed today!

A Night to Remember!

I do not even know where to start!  Tonight was beyond wonderful.  Our stake wanted to do a dance for Joshua and we started the night out in a limousine.  (Every thing we did tonight was a surprise for him.)  He just looked at it and said, "is that for me?"  He has always been sad he could not drive a date himself so this was the best I could do.  Once he got to the dance he could not believe how many people came.  All night long kids kept coming up to him and telling him they thought he was great and he said on the way home, Mom, I am not sure who everyone was!  Then at quarter to 8 they crowned him king and his date queen of the dance and gave them both a crown.  They took them out for pictures and while they were gone Gentri set up.  When he came back in and the crowd went wild for him he looked amazed but you should have seen his face when Gentri began to play!  He kept looking at me, first because he couldn't believe it and then because he still couldn't believe it!  All he could say was wow.  The band called him up and gave him a pocket square and other gifts and he just stood there in disbelief.  They asked if the could go back to playing and Josh said in Josh fashion, "have at it".
A couple of things stood out to me tonight.  One, Josh is so humble he still can't figure out why everyone is fussing over him.  He was amazed.  But I know he is amazing!  Two, we can not thank the people who are supporting us enough.  It is hard to explain what this journey is like, we are so overwhelmed.  A hug or kind word makes all the difference and we feel wrapped up in love!  To have Gentri and their wonderful crew put all this time and effort into tonight,  to have dozens of people thru out the stake organize, plan, and work to put on this great night was truly a testimony to the power of love.  Thank you, thank you, thank you.  This is a night to remember and I know my family goes to bed tonight with visions of stage lights, sounds of cheers, sounds of song, and so much joy. 

I can not explain it but we have peace.  Nights like tonight that go off without a hitch are something to marvel at.  I know that Heavenly Father is leading the way and carries our family thu out this trial.  I wish I could say where this is leading but I know that I don't need to know, we just need to live today and then tomorrow if we are lucky.  Today was a good day and we are thankful for that!