Hi guys, this is Josh. Many of you already know that our precious girl Avelyn passed away yesterday evening. So why am did I title this Pure Joy? I can assure you it has nothing to do with how we are feeling. We are hurting a great deal, and will need your continued prayers and support in this. The pure Joy that I am talking about is what I know without a doubt our beautiful daughter is experiencing as I write this. This is a Joy that none of us has yet experienced here, and won't until it's our time to meet our God face to face - Our God and father of Jesus Christ. The only positive we can take comfort in is that we will some day see her again, and experience that same Joy with her. For ANY of you that are reading this, if you don't have a relationship with Jesus, my hope for you is that you will seek him out, and you will learn that he loves you (more than anyone else can), and wants good for you in all things. Find him now...don't wait. He loves each of us the same - beyond our comprehension - anyone who tells you differently based on who you are in any way is lying to you. It doesn't matter who you are, once you accept him you are forgiven and saved. So...ask questions, try talking to him...he doesn't listen like you and I - he hears you at the level of your heart...no mis-understanding or mis-interpretation. Read about him in the Bible - if you haven't done this before you WILL have questions, so ask. Once you know him and have a relationship with him, he WILL give you peace, help you sustain it beyond human understanding...This is my prayer for you - please seek him out.
If you DO already know Jesus, use Avelyn's story as a motivation to share that story with people when you have a chance - when God is prompting you to...because everyone deserves the opportunity to experience this Pure Joy.
It is impossible for me as a child of his (I've never felt more like a child when it comes to asking why things happen) to understand this. We have prayed countless times for a miracle in every way you can imagine...from our knees with pleading, in anger, with questions of why, etc...etc...and in all of it, we have faith that God's will for our life and Avelyn's is good. We can't understand it, but we know it's true. She had so many challenges that her body simply couldn't sustain them any longer, and we won't know what her life on this earth would have been like - we know from what we saw, heard from experts, and felt, that she was in a lot of pain. Near the end, she couldn't breath without a ventilator set at its highest setting, her swelling was very bad in every part of her body, her lungs were filled with fluid, and her little heart was challenged to pump. Having your children experience pain is horrible, so we are grateful that the pain is now gone - all of it...every ounce of it.
Thank you all so much for showing us your love...we have been so blessed by it. Going forward, we just ask that you pray for us, and as you feel led to support us, we ask you to pray for guidance in that as well. I can guarantee you that we are praying for you and will support you regardless of the trials that life throws at you.
To ALL of the staff at Children's Mercy, words cannot describe the love and care that you've shown us. As you enter the hospital there is a wooden plaque on the wall with this quote that Michele and I noticed early on: "Skill cannot take the place of Sympathy and Understanding, for science without heart is ugly and pitiless." You all made this very clear to us, and that you apply these words every day. You made it easy to trust you and make it remotely acceptable to leave the hospital when all we really wanted to do was stay right beside Avelyn every minute of every day.
I'm not sure how much longer we will keep this site active. We haven't discussed it yet. If and when we do choose to de-activate it, we will continue to communicate with you all in varying ways.
In the end, life on earth continues for us and we are now transitioning to get back to life as normal as it can be under the circumstances. We again ask for your prayers and help in this transition through sometimes talking with us, and sometimes understanding when silence and focus on other activities are what's best. We want your support, and love as always.
That's all for now...