This seems like a lot to bare.....but how does she feel?

I haven't wrote in awhile. You don't know what a Miracle is until you need one.

Things have been up and they have been down. Things have been great and they have been scary. Our hearts are broken and they are full of love. They are happy and content and they are sad and scared. Last week was a terrible episode for Danielle. Our nurse called for help, I was on my way home with both kids, I didn't know what to do. Proceed home not knowing what I was walking in to with both kids, or hold off. I prayed to god to protect us. We walked in and she was ok. Then two days later bad again. In the middle of the night I awoke to that terrible sound, I quickly woke Brad and we went to work doing what we do. Then she was ok, Then a few hours later bad again. This lasted all day long. Our two nurses right now are angels, they provide us great comfort. They provide Danielle great care and comfort. But this aching in our heart is so heavy. Hospice is there telling us what we have sensed. The pattern is changing, things are changing. What does this look like? We won't know until its over, they are honest with us about that. So we hold on to her and love her and hug her and cherish every minute with her.

We did Halloween a little early. Costumes and pumpkins. We did the pumpkin patch and it made our hearts ache without her by our side. But she was so happy to put on her cat woman costume and she rocked it! It fit her perfect and she looked so pretty. Brad's brother and wife brought over their new baby and Danielle was able to 'babysit' and hold her and see her for the first time. She loved it! My heart swelled with pride and Brad's did too. It was so precious.

A couple weeks ago the Deacon came back over and did some praying with us. We chatted for awhile about life, and then about some random things too. We decided that night that Danielle would make her first communion. The feeling of Gods love and spirit in that room were like nothing I can truly convey to you. It was so amazing. It was heart felt. It was whole and pure. It felt like nothing in the entire world could break us in that moment. That is what we want to remember every single day.

But then our minds get the best of us.

The heaviness on our shoulders is so heavy. We are praying God to take it off our shoulders so we can just breathe thru these days. Brad got very sad during her cares last night, just wishing we could have her say Mommy or Daddy I am tired. Or Mommy and Daddy, this hurts me. Or Mommy and Daddy, I am ok. And I wish all of those things too.
This morning the heaviness was taking my breath away. Then I was wondering is this how she feels too? Is this a constant for her? I grabbed my phone and pulled up a devotional, instantly hearing Gods word and casting away the devil brought my breath back. It helped my shoulders to settle and relax. Casting away those demons is a real thing. God is so good. In moments where we feel weak. In moments where we feel alone. In moments of grief and sadness he is always with us. Why does it seem like we are so alone in those times when it feels like the world is against us? We are never alone. God has us. Most importantly God has Danielle.

The biggest comfort that Brad and I have in this, is when it is time, Gods time, for Danielle to sit on the lap of Jesus, she will also be in her Grammy's arms too. And I just cannot explain how much that means and the comfort that brings to us. If she cannot be here with us, there is no better person for her to live eternity with. Her loving Grammy.