Mario just came home and said he met a dad today, a friend of a friend, who has a baby daughter named Reese. She was diagnosed with Aicardi Syndrome very recently, the same diagnosis as our Reese. They live here in Phoenix. There are only 3 cases of Aicardi's in Arizona, only 500 in the world. And Mario met the dad of one and her name is Reese. I don't know what I am feeling but I know God is in this. So strange. So surreal. It makes me cry because the feelings come flooding back of those first days when our Reese was diagnosed. The only way to describe it is gut-wrenching. I remember reading the description of Aicardi Syndrome online (after the Opthamologist told me I'd want to research it--how dare he???). I thought someone had stabbed me in the stomach because it hurt so badly and I could not breathe. I honestly thought I might die from suffocation that night because I could not breathe. My throat was closed and I gasped for air for hours. I kept praying for a way out but knew there was nothing I could do to escape the pain. It was completely unbearable. The days that followed were no different--just more excruciating pain as we had to relive the diagnosis over and over with doctors, family and friends. All the while we stared at this beautiful, seemingly perfect child, who we love so deeply. Oh, it was horrible. And then the things well-meaning people would say that hurt so badly. It was awful and it pains me to think of another family walking through it. I am so sorry. I know that does not dull the pain, but I am so sorry. Only 498 others know how it feels, but I can say, I do know how it feels. There cannot be many things worse that I can imagine. In the midst of my worst pain, the only thing that gave me comfort was something my mom said. I told her I could not believe I was being told that I would lose my daughter someday and my mom said, "No, Jesus will come back before that day!" Of course she does not know that for sure, but that is where my hope lies. I pray that the Lord returns soon. I cannot wait for that day because I know that Reese will be perfect in heaven. There will be no more seizures, no more meds, no more tears, no more blood draws, no more MRIs, no more doctor visits or hospital stays, no more gasping for air. My hope lies in Christ and His promise of a return. Reese has made us live with an eternal perspective--one that waits with anticipation for the Lord. I love HIM so much more deeply because of Reese's life and I CANNOT wait for heaven.
So, to Reese's parents...if you read this...this is for you. I have walked those steps and I know the pain. It WILL get easier. I so badly needed to hear that from someone. It will be OK. Reese is God's perfect creation. He allowed Aicardi's and He chose you to care for her. He is not missing this and He did not make a mistake. I needed to hear that too. It is the TRUTH. She will bless you more than anything else because she will draw you close to her Creator. Because of her, you will never take a smile for granted. You will not get annoyed with the things that used to bug you. You will love everything and everyone deeper. You will see life in vivid color and will embrace what is truly important. We are here for you when you need us.