You know...there are days that aren't so bright. I am writing this blog for the purpose of revealing that there are times, many times, where my spirit is weakened and my fearful, daunting, and sinful thoughts get the best of me. I am always able to be lifted out of the fog thanks to my wonderful family, my supportive husband, and my beautiful Savior, but the point of this post is that the fog exists.
I know every parent deals with the "what if's" but it is a bit of a different story when the "what if's" are closer to being "if's". I'll confess that I still think about what my life would be like if Emri left us, because the truth of the matter is that Emri IS more fragile than other kids. She doesn't have the same strong muscles, straight spine and healthy tissue that other kids do. She has weak muscles, a crooked, bent spine, and connective tissue that continues to stretch in places it shouldn't. Emri won't be able to play competitive sports, or even participate in many PE classes. Emri will most likely face surgery way before most kids even know what the word "surgery" means.
When connecting with other parents on "marfan connect", I have inevitably run across sites of those who have lost their child due to complications of marfan syndrome. It's scary to see a little girl go into surgery and not make it. It's frightening to see all the things that can go wrong even when marfan kids are being properly treated. It's terrifying to know that we, as Emri's parents, are her advocates, researchers, and care givers. Many times it frightens me that I am the one in charge of giving Emri her medication 5 different times a day. It terrifies me to know that I am the one person who knows Emri the best, and if something would happen, it would be completely out of my control to do anything for her or about the situation.
See, it always comes full circle when that word "control" crosses my mind because I know that this situation IS out of my control in God's hands. This is when I remember that God promises to never give you a situation you can't handle and that HE knows the best for his believers. I know all this, but I fall, I fail, and I cry. I cry thinking about the other moms and dads who have lost their little girl or boy to marfan. I cry when I see the video of the sweet little girl that looks so much like Emri and know that she is no longer on this Earth. I see how much her parents miss her and it hurts my heart. I cry when I think too much about all of the hardships Emri will have to face with her physical health. I cry looking at Emri and thinking that some day she is going to realize she is different than the other kids in her class and that she can't do all of the same things they can. I get angry when I think about all the people who are going to make judgements about Emri before they even take the chance to understand her. I do cry, I do get angry, and I do fail at putting my full trust in God. This is the fog. But you know, despite the fog, I know the sun is always there. God is my strength, HE is my rock. Without HIM there would be no hope, no sun.