We had our follow up appointment with Dr. Maiteh today. He gave us the best news to date. He said Benzen's muscle tone, awareness, and all around social skills are great. Then he said 6 words that may have changed my life, "I think he's gonna be OK." Amy & I immediately asked what he meant by that. He told us that from what he sees now, he does not think Benz will ever be affected by the CMV. WHAT?? He went on and on about how he can't believe how well Benz is progressing. He said that Benz might just be the rare case in which he doesn't end up having any effects from the virus. Is our luck turning? Is this going to be the first time in our lives that we are in the small percentage for our favor? Then he said two words I thought I would never hear about Benz in his whole life, which were "He's advanced"! - talking about his social skills like laughing, identifying voices, etc. I immediately was teary eyed. In the same way that bad news hits you like a ton of bricks, good news does too. I hadn't heard good news like this in a really long time. It got to a point where I only knew how to process bad news. It took me a second to collect my thoughts. What did he say? How did he say it? What did he mean? Is this only for right now or his whole life? Its almost like when you get bad news time slows down and you get that dreaded tunnel vision. When I got this good news time started flying, my mind racing, and questions formulating. I couldn't wait to tell my family. We are finally leaving a doctor's appointment with good news. We know that our family members are all white knuckled gripping their cell phones until they hear from us. I got in my car and I couldn't call a soul. I couldn't speak. The silence filled my car and it was loud. I could feel my heart beating again, fresh blood was filling veins, and I could taste fresh air again. I know we are not completely out of the woods yet but it felt good to feel good today.
So then my reflection on this whole experience started. Why did we have to go through this? Why did he have to get sick? What made him better? I know that God had a hand in all this (a big hand!) and it's easy for me to see that Remi was looking out for her little brother to help him get better. The hard part then is why did he even get sick? Then I realized that doesn't really matter. What matters to me is...What did I learn? Did it make me a better person? Did it make others around Benz better people? Well, what I learned and will continue to learn would probably fill a book. I was telling my family last weekend that I feel like I am the main character of the movie "The Truman Show" with Jim Carey. I feel like the whole world is watching me to see how I will react to different situations. I get an unexpected character test at least once a week, like the coffee lady and the guy I helped with sign language, plus I have a sunglasses story, and a Tim Hortons story to tell you all sometime.
Regardless of what Adam says, I am going to recommend a song in this post. I won't post the lyrics ok Adam? The song is another remake. It is by Sara Bareilles called "In your eyes". Again, another song that has nothing to do with my situation but I turn it into pertaining to me and Benz. I like the lines that say "In your eyes I can see the doorway to a thousand churches, In your eyes I can see a resolution, and I look to the time with you that keep me awake and alive.
All I can say is thank you all for your prayers and support. Keep praying for my little man.
And in case I don't see you...Good afternoon, good evening, and goodnight.
Ben
A Mornit Little Remer Family! As I am sitting here on this Holy Day, I am reading about a Real Time Miracle. I am crying as well. Not great big huge sobs, but as you said tearing up. What a journey. Why it happened, I don't know. I don't believe that it was "God's Plan". But I do believe that he walked with you every step of the way. Every single one. I try to find the positive in hard things. I feel like if you don't then the devil has won, and I guess I'm just too competetive for that. Positive #1- You got to see first hand how R Angel helps people. Very rarely do we get to know exactly how our "donations" impact people. You were able to and you know it is a worth while cause. You let us see that too. Positive #2- You allowed people to show and do their best. Our office came together as a team to raise money for gas cards. We took more away from that as a work family then what we gave. Positive #3 (I'll stop there, I could go on and on...) You allowed us to share in your lives. Through your journey, you helped at least me through mine. Your struggle with Benz came at the same time of the loss of my dad. While your "why" was different than mine, I felt that our feelings had the same "tinge". Thank you for sharing. Ben, I have watched a "kid" I've known most of his life, but didn't really know him become a man. What a moving experience this has been. I've had a new grand baby born since Benz and for the first time, was very aware and thankful for a healthy baby. When she cries I thank God that she can because sick babies don't cry. I've taken that for granted. I am really going to miss this. I feel like I have made some new extended family by you being so open and willing to share. You and Amy have been given the responsibility to witness, and you have taken it seriously. I'll see you every 6 months, make sure you come in when I'm here so that I can get an update on the "Little Remer Family". Amy, you make sure to bring Benz. I'm a great Nana, and he's mine for that hour.
ReplyDeleteAlways in My Heart,
Josie