How Good God Is

First off, I forgot to share about another moment of Providence.

Monday morning, as Angelique opened the blinds to the back patio, we noticed our rose bushes were in some serious need of clipping. Normally, that falls under a mildly annoying, but necessary chore, but when we looked out at the patio...it just seemed like a jungle. We are regaining our functionality around the house - albeit slowly - but this one still eluded us. She said, "The roses really need trimming. [sigh]." To which I said, "Maybe we can have someone trim them for us!" I was thinking of all the wonderful people that live near us that have been looking for ways to help out. However, there was also this small feeling of shame - like I should be able to handle such a basic task. Angelique replied with, "Okay, WHO?" My first thought went to my minister Dennis, who helped me with my roses before Ali was born; showing me how to trim them and how to put manure on the soil in the winter. Then I thought, "How am I gonna get Dennis to come up here to do that?" He lives and works 30 minutes away and again, I felt ashamed to call and ask. My shoulders slumped, and I answered back to Ang, "I dunno." and that was that.

Or so I thought.

Later that morning, who calls? Dennis.

He says he's bringing food to the house from folks from church. Later that afternoon, he arrives with his wife Linda, and Linda immediately tends to Angelique and Bella as Dennis walks straight to the patio door. He says, "Those roses need trimming. Want me to trim them for you?" Then he says, "I already trimmed mine and my neighbor's this morning!"

As I get Bella's wound care supplies ready for her dressing change, Dennis goes to work on the roses. Linda remarked to Angelique while watching him out there," Oh, he's in his element now!"

God doesn't just send someone over who knows roses, but DELIGHTS in caring for them...and not just his own, but those around him he cares for.

That's how good God is! All the time!

Thank you God. Thank you Dennis.

Okay, onto today...

Our home health nurse, Kelly, visited today during dressing change for Bella's first weekly check-up. It is really great having someone come to the house every week to assess her condition. We know that NOTHING will EVER get out of hand with such vigilant care and oversight.

Anyhow, it's been a week since Kelly has seen Bella. She couldn't believe her eyes. She said she thought she was looking at a different baby; Bella had improved that much since she last saw her. She couldn't believe how good her skin looked and how fast her wounds had healed. She was also thrilled to hear that Bella was a big fat 9 pounds at the Doctor's office yesterday!

It was so great to hear, because while we know she's getting a little better every day, we see her every day, so to have that someone who has tracked her progress step away and come back...well it's like when your aunt or uncle says, "I can't believe how much you've grown!" Remember that?

So, 3 for 3 with recent medical assessments. There are NO blisters in Bella's mouth anymore, and only one small one on her lip yesterday which mostly cleared up today. Every wound on her body is now healing well, and that left foot...the tough one...is almost closed! God willing, by this time next week, there will be NO OPEN WOUNDS ON OUR DAUGHTER!!! That will be a first since she was born exactly 4 weeks ago today. What a journey those 4 weeks have been. They feel like 4 months to me. Bella just keeps getting better, and better, and better. You know what? One day, Bella's gonna look back and say, "Yeah, I was born with this rare skin condition, but when they brought me home from the hospital, it went away."

Awesome.

You know what else? You were there. You were there through it all. You saw it all unfold, and you willed/prayed/CAUSED it all to go this way. Our communion of intent has been seen and heard by God and the Universe, and they have listened! I use that language to honor all the belief systems at work here. No matter what language we use, I believe that we have summoned a power greater than our own to our aid in this time of crisis. Call it what you want, but make sure you THANK IT because IT WORKED.

Love and Gratitude.

The two most beautiful states to be in. Our love and gratitude extends to you all for your inspirational support of our family. You are noticed, you are loved, and you are appreciated.

Blessings to all of you and good night.

The New Normal

Is that a smile in there?

There were a lot of prayers said for Bella this morning around the country at various churches and congregations. We could tell, because today was like no other day in this journey for us. It felt...normal.

It was the first day since Bella's birthday that we all started and ended the day under one roof as a family.

It was the first day Bella got to go to the park.

Thanks to our Pastor Dennis and fellow congregant Mimi coming over to deliver flowers from our church, we cleaned and straightened and things look almost back to...normal.

In grief healing, we talk about "the new normal." It will never be as it was, but there is a new stability available from which to reach out and take life by the reigns again. We saw a glimpse of that "new normal" today, and we are grateful TO ALL OF YOU who have held that vision in your hearts and minds these recent days and weeks.

Thank you.

Now to the good and bad of the day:

The Good:

Dressing change at just about an hour again. Ang and I have now worked out who does what and it is running very smoothly. Bless our next door neighbor Becky for stepping up and supporting us the past 3 days while home health care drops the ball.

Bella spent all morning awake and alert making eye contact, and visually tracking (at 6-12 inches), and appeared, like a normal, happy baby.

We stopped giving Bella the multivitamin drops they sent us home with. Passing gas and poop all morning without any pain at last! She's on breast milk+formula already, she's much happier now.

We walked to our neighborhood park today as a family, the way we thought we would all along. There were many many days where we thought even today was out of reach.

The Bad:

Bella is healing well in many places, but her left index and middle finger, shin, and ankle are all having trouble healing. We realized Bella kicks her left shin - more like rakes it - with her right foot, so she's beating herself up. The skin affected when I accidentally pulled her boot off looks like it has died and is going to slough off now. The fingers are tough because it is difficult to wrap them in such a way that keeps them covered and moist enough to break down all of the mangled dead skin on top from the giant blisters that formed in her isolette. She has to wear gloves on both hands now as she has knocked the skin of her lips more than once just today. Because of her GI pain, she has developed blisters on the ends of her fingers from squeezing her hands so tightly.

Ali spent so much time with Grandma recently that she has forgotten how to do what she's told! LOL. You can SEE the shock on her face when she asks mommy or daddy for something and they say no. It's mostly pretty funny and only occasionally annoying. Wouldn't have it any other way, though, grandma has been a LIFE SAVER over these past 3 weeks. We love you grandma!

The Request:

Even with all the success, blessings, and miracles around, it's gonna be a long time before some of her wounds heal. Being in charge of that job is both empowering, frustrating, and scary at the same time. Wound care / daily dressing changes is the high point of anxiety for the parents and pain for the child. We have to psych ourselves up for the task every day. Please pray that Bella's wounds heal fast and permanently, please pray for continued strength for mommy and daddy as struggle each day to recover and reorganize.

Hold with me the vision that says, "One day, Bella will look back on this and say, "Yeah, when I was born, I had this rare skin condition, but when they took me home from the hospital, it went away."

Good night and God Bless each and every one of you for your love, generosity, and support.