Yesterday we went to the arthrogryposis clinic lunch-in and met families and their kids. Talk about a slap of reality across the face. (Negative Nancy won't leave me alone.) (I really should not be blogging today.) (But I should because we are freaking moving and who knows when the internet will be back in my life.) *sigh* I mean, it was good. It just sucked. For the first time, I saw what my Edward is going to be like, kinda. All the kids were super sweet and just nonchalant, you know. It was great to see their demeanor. But to actually see the challenges they are faced with, just freaking sucks. I hate it. I HATE that my baby has this stupid FSS. I hate it so bad. Buuuuuuuuuuuuuut, it is what it is.
On a positive note, Edward is the sweetest. We had some friends over the other night and before they left, I let her hold Edward. She just looked at him and she started to cry, which in turn, made me cry. (This had happened on another occasion.) It made me feel really good. Edward has this for a reason. God knows what He is doing. (You are probably thinking that I am super redic because I just got done saying how much I hate that he has FSS. And I do. I really hate it. It is soo hard to explain. Ultimately, though, I know God has it under control. But I still hate the challenges Edward will be faced with.)
Yesterday, Edward had his first cast change post surgery. My Doc said that Edward will probably need feet surgery. His muscles are just so freaking tight. His right side is worse then his left, too. Which is bizarre because his left foot was more severe then his right. Whatever. All I can do is pray that Jesus heals him.
I am so blessed. I know this. I am having a hormonal day. Please forgive me. After all, tomorrow is another day!
|June 29, feet post cast/surgery|
|A morning downtown. The cutest ever!|