One Step Forward, One Step Back

Well, hello everyone. Sorry it's been a while since any updates. Well, that's because there hasn't been much to update about. Bella's old wounds get better, but she continues to get new ones. One step forward, one step back. We are struggling with the reality that this is what it will be like every day of her life. We've been praying so hard for things to just "go away," that new or recurrent blisters almost feel like slaps in the face. We feel like somehow we are letting her down. Some of the blisters go away and stay, some just keep recurring. It makes us question whether Bella will ever be un-bandaged. One day at a time. One day at a time.

The good news is that her gas is subsiding. After just about a week on Zantac and Culturelle, coupled with Ang discontinuing spinach (spinach gave Ali bad gas as a baby), Bella has been mellow, almost serene today. That's a good thing because yesterday she was miserable all day and evening. We were told there would be good days and bad days, and those EB parents were right!

Here's a great Providence story from this past week I forgot to write about.

While at the EBMRF picnic last Sunday, a woman stopped me to ask me if Bella was an EB baby. She said her granddaughter had EB and she wanted us to meet her. Her name is Noelle, she's 8 , and lives in Irvine. The grandma wrote Noelle's mom's name and phone number on a piece of paper for us and we all went on our way.

Two days later, our neighbor Robert dropped by. Robert and his wife Katherine gave birth to a boy, Julian, three weeks before Bella. We don't know them well at all, but when they found out about Bella's condition, Robert came over and told us if there was ANYTHING they could do, let us know. Anyhow, Tuesday, Robert appears at the door with a gift for Bella! We talk for a little, then get back to dinner. As I open the box, a cute baby outfit awaits inside along with a card. As I read the card, there is a P.S. paragraph on the left side of the card. (You know, the part where you actually write something personal). Anyhow, the paragraph reads, "We want you to know that my sister in law has a daughter with EB and would be happy to talk to you and help out in any way. She lives in Irvine and..."

The name and number? Same name and number that was written on the note from Grandma.

Katherine had no idea we met her niece just two days prior.

In a metropolitan area filled with millions, and with a diagnosis of only 10 in a million, what are the odds? Too great for coincidence, leaving once again, only Providence.

On a separate note, I went back to work at UCI Medical Center this past week. I work in oncology, and the two sessions I had with two patients while they underwent chemotherapy were two of the best sessions of my brief career. The level of empathy and empathic listening was unparalleled, and the authenticity I was able to tap into created such a safe space, the two patients opened up about all sorts of things related to their journey through cancer. One patient even recalled the birth of her child and having to go home from the hospital without her due to her being only 4 pounds. No one can explain to you what that is like. It is the most "wrong" feeling on the planet...like there is something terribly wrong with the planet and there is nothing you can do to undo it.

I realize that my own suffering has created a new level of connection with my patients, and I am grateful for the tender sessions we had this week.

There really is always something to be grateful for, sometimes it just takes a little reflection to see it. Thanks to you, this site allows me the opportunity to reflect and share these reflection with you. Your feedback continues to strengthen us as we brace ourselves for the marathon that we thought was just a sprint.

May the abundance of God's blessings be upon each of you today.