Everything for a Reason

Morning all, yes it is early but not by choice. I was actually completely passed out in bed from another late night discussion when whining and collar jingles woke me up. Yes, Redd is a good boy...he needed to potty so Mama had to get up and walk him because peeing on the peepee pad would not do. Now he is sound asleep next to me while I write. Things are not going well. Natalia has lost the ability to move herself and is losing her gag reflex as well. Some of you may remember that is what hospitalized her in late June at the end of her radiation therapy. Basically, Edgar and I believe the only reason she is still with us is the steroid she is taking. Dr Banerjee had told us that if we took her off the steroid 3 weeks ago that she would possibly last 2 weeks. We weren't prepared to do that yet. A friend wrote me yesterday that after caring for a dying family member in great pain for while you begin to pray for their death. For God to lift them up and take away their suffering. We've gotten to that point. She is no longer our laughing, loving little girl. She has become trapped in a body that is no longer hers to control. She has lost interest in most things and is beginning to see and insist on things that are not there...I hate all these drugs she is on. There are drugs to keep her brain from swelling, to keep her stomach lining intact, to keep her chest from filling with liquid, from having pain (HAHAHA), another liquid pain med and a anti anxiety med. Is it any wonder she is seeing things? We are going to ask the Dr if we are at will to taper the steroid or if they need to schedule it. We need to set her free. What we said we would not do with surgical procedures and hospital stays we are now doing with the drugs and it time to let go.

My longest best friend in the world, Katie, will be flying in from Denver today. I have known Katie since we were Natalia's age. I used to throw apples at her and her brothers from Marty Roberts backyard...Katie lived on the next street over and it was war of the streets 'cause the cool kids lived on Harris St. She would, of course, disagree about that. Anyway, as soon as she got the news that we were in the final stretch with Natalia she called me and said she was coming, no matter what. We have not seen each other since she was the maid of honor at my wedding eight years ago. It could not be a more perfect time. We need help with Pia and of course a little more emotional support for us.

I need to talk to my supervisor today when I go in to clear my desk. Edgar can not be home alone with Natalia for what is to come. He stood up wonderfully during the last 3 weeks but now we need each other more then ever for the end of Natalia's journey. I want to make sure everything I can get done gets done. My supervisor has been awesome about letting me know that they are there to help support me and take of things when I have to be home. She has also been been good about letting me work when I need to...some days I probably cried more then worked but I needed try for my sanity to get my mind off things at home.

We say it a lot but it needs to be said. The Lord has blessed us greatly along this long journey we have been on. He has brought us many new friends, shown us wonderful sights and shown us how amazing and compassionate the world can be. Edgar likes to say we are the tree and all of you are the soil our roots grow in. The soil is very rich and fertile because we have grown tall and strong. So thank all of you for your support during the past year because without it I don't think we could have gone on at times. We will have an incredible legacy to live up to when she leaves us. We just hope we do Natalia justice.

Much love to you all,
Roni