There are many statistics on Lissencephaly, but I did come across an article that stated it was 1 in 100,000 kids were affected.. and I always say that "we did always want to be special, but not this special." So as I go through each week, I often experience waves of shock still, that my son has a rare disease, and why us?, and so forth and so one... the same tape just replays, especially on hard days for Edmond.
I recently received a publication from my old alma mater, Vanguard University, that features different alumni and articles and updates on current and graduated students. There was a story in there on a little girl named, "Mercy," a daughter of two Vanguard graduates, who was diagnosed with another rare brain condition and in fact the statistic on her was 1 in 10 million.... I had to read that one twice... 1 in 10 million? Good grief I thought, that's super rare. She also has severe complications such as Edmond, but it appears she is able to walk and communicate with some limitations though. What struck a cord with me as I read their story, was the father's statement about thinking, "this is so unfair", and his struggle with his faith and what was happening to their daughter, thoughts that every parent would go through under these circumstances. But then the father stated that he realized that God's grace is also not fair, and yet God gives it to us freely. This is something that resonates with me, and that I will be chewing on for a good while still to come. As a parent who endures the daily battle of a child with special needs that Edmond has, you are looking for a way to escape the "it's not fair" tape that plays over an over again and for a way to make sense of things and finally put that tape to rest. Thinking about God's grace... it just may be the glimmer that I'm looking for.
Theres a well known scripture, Jeremiah 29:11, that his frequently quoted and I have to admit, I get annoyed with how nice and sweet it sounds, when life seems to be dealing out bitter winds and scary waves. But on Sunday, as the preacher asked us to turn to it, the entire passage begin to jump off the page to me. If you look at the verses before and after this sweet little nices verse of 29:11, you find the whole picture of what was going on. God is speaking to his people who have been and are presently in exile, captivity, and in a very dark place. He is speaking to them in a desparate place, where fear and heartbreak are presumably the prominent features of their hearts... a place where they feel banished by their God.
Let's look at it... Jeremiah 29:10-14
10 This is what the Lord says: “When seventy years are completed for Babylon, I will come to you and fulfill my good promise to bring you back to this place. 11 For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future. 12 Then you will call on me and come and pray to me, and I will listen to you. 13 You will seek me and find me when you seek me with all your heart. 14 I will be found by you,” declares the Lord, “and will bring you back from captivity.[b] I will gather you from all the nations and places where I have banished you,” declares the Lord, “and will bring you back to the place from which I carried you into exile.”
There are times in our lives, when it seems like God is out to harm us, when He has allowed so much pain and difficulty in our lives that it seems that He cannot be a God who is "for us." I struggle with all my heart everyday as I watch Edmond, to still continue to trust God, to believe He has my best in mind and that he knows my name and Edmond's name and has a plan to give my family a hope and a future, but it's not easy.
I'm glad to have read the story of "Mercy" and to hear how her father is making peace with what is happening with her. Understanding grace, may be the key to it all in the end.