It all boils down to this
Yesterday I struggled. For a while I just tried to figure it all out. No need to tell you it was a futile attempt. No answers came to me. No understanding. No reasons. Just confusion, questions, doubts, fears. I can't stop this from happening. I can't do anything really except keep on keeping on to the best of my ability.
I want to scream and yell and stomp and let the world know how awful this is. Its just such an awful place we find ourselves in. When it all boils down this is what I know. A mom protects. A dad solves problems. In this situation we get to do neither.
Tonight I found myself staring at Ashley Kate. Her beautiful complexion doing its best to cover the complex web of veins that have sprouted underneath it. You can see it now. Its visible. The breaking down of her tiny body. As her body does its best to form new pathways to move blood throughout itself. I've tried to pretend I haven't seen what I'm looking at. I've ignored it day after day after day. Then on our trip the photographers could clearly see the blue patterns climbing up her neck, sprouting through her cheeks, across her upper lip, onto her eye lids, and now her forehead. Her wrists, the insides of her elbows, her thighs, its everywhere. On Wednesday one of our doctors noticed. I can't remember what he said simply because I was stinging inside. Its real. Its there. I'm not imagining all of this. In some ways I sit and stare in awe at Who God is and how He has created her. His design is allowing her body to compensate for the lack of blood flow and create new paths to move it and keep it functioning. That is truly amazing. She was designed fearfully and wonderfully by His hands. In other ways it sends chills up and down my spine. Her body is wearing out. The strain of occluded, scarred down, catheter intruded veins are taking their tole on her. Oh how it breaks my heart! So please let me scream and yell and cry and weep and shout from the roof top how wrong all of this is! Its just so WRONG! Let me protect her. Allow her daddy to solve this for her. For us. Please give us a way to make this ok. Help us help her.
My sweet Ashley giggles from deep inside of her. Its infectious. Contagious. We all sit around her on the floor of her playroom and can't contain our laughter. My precious girl you are so sweet. I love you so very much. So much I ache at the thought of trying to fill your days with a love so great that it fills you up. Do you know how much you are loved? Do you even realize how very much we wanted you? Do you know how long we waited for you? Will you ever understand how much we want to keep you? Oh how much the Father must love you. For I know He loves you more than I and for that to be true my sweet Ashley He has got to love you an awful lot.
At the end of the day, at the end of this life I know the Truth. I know He is near. I know He loves us. I know He is trustworthy. Still I ache. Even though He holds us close to His heart in this life there is pain. One day there will be no more tears, but tonight they fall from the eyes a helpless mommy who would do anything to protect her daughter.