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!