One very difficult thing that we went through during our search for answers and a diagnosis was how our daughters looked. My daughters and my wife are beautiful! Absolutely beautiful. Unfortunately , this is a problem when you are trying to make people understand how sick and in pain you are. When our daughters weren't screaming in pain from another bowel obstruction or screaming while we gave them a routine rectal irrigation, they were all smiles. They were so resilient, but how could they not be when to them that was all they ever knew. I just hated it that at times we were not taken seriously because people would look at them and say "but they look so good." My wife is so gorgeous. She's an absolute 10 and that scale doesn't even do this woman justice. You would never guess that her insides were so broken.
I want to remind everyone that just because someone looks okay, or seems healthy, and just because someone is not impaired physically or mentally so much that you can tell from spending just a few minutes with them does not mean that they are healthy and fine. I have seen them go downhill so fast. I have danced and sang at the top of my lungs with my wife one night at a concert and 48 hours later sat in a hospital room with her after she suffered from Transient Ischemic Attack (like a minor stroke) at 27 years old. It could all be taken away in just a blink of an eye.
So today my kids might be smiling, laughing, coloring, solving puzzles, and singing "Let It Go" into our karaoke machine. Tomorrow they might wake up with a cold and next week they might end up in the hospital. My wife and I might be hanging out with friends or jamming at a concert to one of our favorite bands. This doesn't mean she is doing better. She's just having a good day or she is just pushing through because she refuses to let this disease strip her of a "normal" life. Whatever that is... My family is so amazing and so resilient and every time I think something is too hard or I am too tired to do it, I remind myself of the struggle my daughters go through just to produce enough energy to be kids. I remind myself that this morning my wife could barely pull herself out of bed because she spent all night working around the house. Oh and today she cleaned, cooked, taught, and loved for all of us....all day. She does more with less than anyone I know. These girls truly are my heroes. Even though at times these girls don't look the part, the struggles they go through are very, very real. I love you guys. Thank you for working so hard for us baby, even when you can't!