Update 2018

Summer 2018

It's been a wonderful year. We've continued to fight the good fight. And Gerard is officially "on the charts." That means the growth charts. What many of you don't know is that DCFS was called as required by my health care team, and they made sure that I wasn't "starving" my poor boy. That was a rough day. And everybody has bad days. Yes, he was in "failure to thrive" again after my last summer's update. Here we are! Back again to let all of the supporters and friends know that their money and prayers have gone to good use.

Two years ago I could not have dreamed we would be navigating chronic illness so well. Two years ago Gerard was down to 40 lbs. Yes. It was a lot of dark days when I didn't know who to call because all of the doctors had no answers. No advice. I'd get pitiful looks from friends and strangers. And friends started avoiding us. When we needed them most, a lot of friends exited left. And right. And right down the center. That's because it's a hard thing to watch. And I wasn't much fun to be around. My usual happy demeanor was depressed because I'd failed him. Or at least I thought I had.

Everyone wants a happy ending, right? The difficult part of answering the question of, "So, how long will he need to deal with this?" is trying to be patient with people in general about their lack of comprehension. And their disbelief that a child so young has issues with his colon. And his rectum. Colorectal disease is something men, in particular, don't like to discuss. Chronic disease. It's a lot like cancer. You know, the word people say and some go running away. I have to remind them that there is no cure, it's chronic, and that means the answer is - The rest of his life. Could there be a "miracle" - ??? Yes. I've been reprimanded by my father that miracles do happen and he continues to pray. Well, yes...pray. Keep on praying. But we need friends, we need people to talk to us like we're normal, and we need more than prayers. We need kindness when the people we actually pay don't help us.

I've decided to start writing a book. Something that will help other parents. There's really nothing out there for us.

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