EEG Happening Now: I always have the desire to write what God is showing me through Ayami. I want her to know how God is using her greatly for his purposes and how much he loves her, but its hard to find big chunks of time lately. Right how Im walking her to help her fall asleep for another EEG. I fear the infantile spasms may be back, with the potential to take her back to the beginning again developmentally. Many people might only see her as so far behind to begin with, but she came home to us behaving developmentally like a newborn who had no peace. Since treatment, shes blossomed. She knows us and loves us. She knows her name and responds to us calling it out to her. She smiles. Never take a baby looking into your eyes and smiling back at you for granted. Its gold. She holds her head up now, and she tries so hard to let her brain figure out how to move her arms where to go. She eats from a bottle and eats cereal. These are all huge things that dont come easy for her or us as we hope and anticipate the best, most normal life for Ayami. But in moments like these, many of these moments weve had the past six months, where Im reminded that I have no control over this test, these are the moments that God is truly teaching my heart. So Ayami would be classified as a special needs child. Her brain is broken, and cant be fixed. It can be trained to learn things in a new way, but with the uncertainty of her future, and the potential it has to be very difficult on both her and our family, sometimes its best to just live in the moment. Thinking past today sometimes reveals too much of my own special needs in my heart. Im so utterly broken. Our hearts are so sick. Gosh all the things wrong with Ayami are so scary to me. With each new diagnosis or statistic about her possible future, my heart breaks for her and for us if Im being honest. I want to watch her run around with Olive, I want to homeschool her alongside her siblings, I want to watch her fall in love one day, and I want us to share a faith in the one who is writing this story. As I long for these special needs of hers to be repaired, my love for her does not waiver. I would not love her more if she was healthy, and I do not love her less as new hard news comes to us. I want to only love her more. I believe it is the same way for our Father in heaven. We are so so broken. Many of us dont even allow ourselves to see just how in need we are of repair. We are special needs, and he is our only hope, and his love does not change for us because of our brokenness. As a parent, Im learning and being molded by The Parent, and He is so willing to teach. And as a child, with so many needs and dependencies on my Father, I can only fall to my knees in awe and humble thanksgiving. How could He love me, the unloveable? He does this in the same way He gives me such love for this precious baby Ayami who was and is unloveable to some. Yes, there is suffering in all of this. For every person in my family Ive seen how this has affected them. The thought that my children may very well one day be handed over the reins of her care when Im long gone, both give me a sadness and an anticipatory joy. The world screams its wrong to put that on your children, but the truth of the Word asks me how I couldnt. So much of what is true and real is revealed when you follow Him. Its so hard, but God is changing us, and its okay to cry out to him and not want the pain. Jesus did the same. He cried blood in a moment when He knew what He was about to do was going to be more painful than anything He had every done before. And from it, we became a joy to Him and glory was brought to our God in Heaven. We get to experience a small taste of that. It brings me closer to Jesus. It makes both His humanity and His deity more real to me. And though there are days I just want easy or normal, I would never, I could never, go back. People will say, I could never do what you guys did. Well let me say, we didnt. This wasnt what we had pictured. God did this all, and He is in it all. Ayami has a family, and she is adopted the same way God wanted me, broken and all. The difference is that He knew what He was getting himself into, and He chose this. He chose me and you. He wants to use us big time. And He will, but there is a surrender that has to come from the person hes using. Its so hard, so terrifying at times, but the joy is like no other gift you could receive. It reveals His grace and mercy with a new lense. We are so blessed by Ayami. I know that He will sustain us and pick us up in our weakness when it just feels too hard. Please continue to pray big things for Ayami, for her life, for our hearts, but in the end, for His Glory.
Posted on: Wed, 08 Oct 2014 01:38:14 +0000
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