Broken down and lifted up

Aaron's little body is very broken. He has had sores for months now that do not heal. The doctors believe it is gvhd. We tried a new drug (a last hope) and so far it does not seem to be helping. We decreased Aaron's steroid recently because he needs to get off of it. His sores started getting worse again. Now he is back on the same dose he has been on for probably a year. The steroids have caused his cataracts, do not allow him to grow, have made his muscles and bones very weak, and caused his skin to be incredibly thin. They have saved his life so far and for that I am grateful.  Aaron's oxygen requirements have also doubled this past month.

What has not broken is Aaron's spirit. He is funny, smart, feisty, stubborn, and extremely particular. When he does not want to do something, he does not want to compromise. However, when he decides he is going to do something, watch out. Nothing is going to stop him. He likes being in the hospital and everyone knows and loves him here.  He finds great comfort in his dogs and his iPad. He enjoys learning. He loves his sitters. When a sitter has not come for a few days, he asks about them. Today a child life volunteer came in. He asked (demanded really) that she sit and watch his iPad with him. She was super sweet and watched train videos with Aaron. Aaron enjoys company.  Unfortunately, the hospital has a strict visitor policy and we have to limit who can visit.

Aaron playing with Drummer

Two weeks ago I think I hit my lowest point.  Aaron had been in the hospital nearly a month.  He is not getting better and the doctors have no other options.  He may get better and he may not.  I feel like I am facing another point where I might have to say goodbye to the love of my life.  Over the last year and a half, I have had to sell my home and leave Florida to start a new life in Ohio.  Start a new job.  I have been lied to and cheated on for years.  I am still the third wife of a man I am longing to be divorced from. The divorce has been a nightmare with having to prove things like I was actually "married" since 2010. The final straw that broke me was finding out I am being secretly recorded while caring for Aaron in the hospital.  I have a son in the hospital who may or may not be with me for much longer.  I have prayed and prayed and he is not healed.  I was mad!!  And I was mad at God!  I was driving in my car and I screamed louder than I knew I could.  I yelled at God and told Him that He must absolutely hate me.  I even told Him I was ready to turn my back on Him.  He did not care about me so why should I care about Him.  I said He must show me a sign or I am done praying.  I wanted to be done proclaiming the good He has done.  I was done!

Then I felt super guilty.  Of course I did not mean the things I said.  But I was angry!  Why does the suffering not end?  Why can't I have some peace for just a little while?  Then I screamed some more.  Then I felt guilty again.  So I turned on the Christian radio station hoping that I could redeem myself.  The first song that came on the radio was "Tell Your Heart to Beat Again" and I knew what I always knew.  God is with me.

https://youtu.be/azYK8I2uoog

I know that I am not someone to be pitied, but envied.  I have been given one of the most beautiful children on Earth.  God has chosen me and trusted me to care for him.  We laugh every day and love life together.  Aaron inspires people and brings people together in prayer and joy.  God has used Aaron in ways that I cannot believe.  I am truly blessed in life.  I am still scared of losing Aaron, but I also have a sense of peace knowing that everything is going to be okay.  No matter what the future holds.  I am embracing the new chapter of my life going forward and I continue to pray that God will allow Aaron to be a part of that chapter. 

Thank you for all the prayers.  Please keep them coming.  They keep us going.  They lift us up.