Wednesday, March 10, 2010

Bella's head is 'normal!'

A rare moment of exposed skin in between bath and bandages...

Well, we dodged one bullet this week. Thank God.

Bella's head has been steadily growing off the charts. Her growth curve is vertical! Her pediatrician ordered a head ultrasound to rule out Hydrocephaly. We went on Tuesday, and got the news later that day that is was negative. So, Bella just has a big melon. We'll take it! In a week that saw big, fresh new wounds to both upper arms/armpits, and reopening of "The Big Two," (left knee and foot), as well as matching holes in her cheeks from digging her thumbs into them whenever she's tired, it's been a long week for all of us. She's in a spell where once again, we can't console her once she gets into a tirade. It's like she's "stuck" when she's pitching a fit and can't get out of it until she literally collapses from exhaustion. Kind of lame. Last night, I had to resort to a new wrestling move I affectionately call "the Python," where I hold her against my torso as I rock on the couch or in the glider, isolate one leg on either side of my right thigh, then wrap my arms around her torso in a sort of reverse bear hug to isolate both arms to keep them away from her face. I end up cradling her with her back to me and she really doesn't like it since all she wants to do when she's tired is dig holes to China by way of her face, but it keeps her from further injuring herself, as bad as it may sound. Poor kid. I don't know what we're gonna do when we go for the BMT. How is she gonna fall asleep in her cradle all wired up with IV lines everywhere? Luckily, I don't have to have the answer to that. It's 3 months away, and even then it'll be in God's hands, not mine....

...which brings me to a point I want to share about. Recently, I heard "God doesn't give us anything we can't handle," for the four millionth time since the day Bella was born. While I appreciate the sentiment, I disagree with the statement. Let me explain. Here is how I see it. God gives us things we perceive we can't handle ALL THE TIME in order for us to grow spiritually. For me, spiritual growth relates to the connection with a higher power, a power in which I can "give over" my troubles, fears, prayers, concerns, and that entity will in turn manage those things for me. I love the line, "God is in the results business." In other words, what can we really control? If we were really in control folks, nothing bad would ever happen to us or our loved ones, because we'd never wish it upon them or ourselves. The more of life I can entrust to God to manage for me, the more peace and serenity I have, regardless of the situations at hand.

On my own, I can't handle EB. Even Ang and I together... we can't handle EB.

It's precisely because I give it to God to handle, that in turn it looks like I can handle it as well. I'm in the delegation business. Anything too big for me... goes to God. "Here, YOU handle this. It's too much for me."

So, my line goes more like this, "God doesn't give us anything HE can't handle. It's up to us to give it back!"

Alright, other news...

Bella attended her first community drum circle at the wonderful Soul at Home yoga studio I recently told you about! A colleague of mine, David Van Dorn, hosted the event, and there were about 25 people in attendance. Bella sat on mommy's lap and grooved and bounced and smiled and shouted just about the whole time. In fact, she was more into than Ali was! At one point in between grooves, an elegant older woman by the name of Merle, who was playing the most fascinating bass drum of her own, said something to the effect of, "If anyone wonders whether or not we were designed for this [drumming], just look at that baby." To learn more about what drum circles are or where you can find one, CLICK HERE.

The molnlycke video is up! I had to buy a license to use my friend's music. No biggie. 5 bucks. Go check it out HERE.

The book is selling, slowly. Folks, PLEASE don't put it off. GO BUY THE BOOK, then go watch the video. Then, buy a couple more after you've read it to give as gifts. Seriously, I don't remember the last book I read that wasn't either a recommendation or gift. You have to give at least 2 gifts away in the next year, so kill two birds with one stone. Please. I worked my tail off for months and months to give life to that book. Please support us, and support the organizations we're partnering with. If nothing else, go read the amazing book review on the sales page. Just click here and scroll down to the review and read the whole thing. If that review doesn't get you to want to buy the book, YOU CAN EVEN DOWNLOAD IT FOR FREE to take it for a test drive! Right under ADD TO CART is a little link that says "Also available as a download." Check it out. I guarantee that if you give it 5 minutes, you'll be hooked. If you get hooked, be nice to your eyes and buy a printed version.

Okay, Okay, enough plugging... wait.. no... one more thing. =D

Pretty please tell others about the book! Whether over email, or twitter or facebook status, let people know! Just give 'em and let them click on from there. People won't know about Bella's story unless her story is shared, and I only know so many people. But, through EACH of YOU, that reach is expanded EXPONENTIALLY. I think they call it "viral marketing." It's the newest thing, except that it's not new at all. I think they used to call it, grass roots, or word of mouth. Whatever. Pass it on. Let people know about Bella. Please. Her story matters in a world of hopelessness and drudgery that is spewed forth 24/7/365 though multiple media outlets. Hers is a story of hope, and of faith. Those are two things that pretty much everyone could use a second helping of these days.

Now I'm done (for now).


  1. She is such a doll! Thanks for keeping us up-to-date. She's growing like a weed! =) I'm getting the word out about your book as effectively as possible. Conference would be a great plug...

  2. hi Tim. I just finished your book tonight. Thank you for sharing your story. I'll continue to think good thoughts for Bella and your family. This is the first book I have read for a few years and it has made a huge impact. I'll hold the thought in my mind that "One day, Bella will be able to look back and say, "Yeah, when I was born I had this rare condition, but when they brought me home from the hospital, it went away." Russ F.