I am inventing new time with these late night posts.
Good news. NO emergencies today. Wound care went very well. I think we got it down to 90 minutes today with almost no help from the nurse. Actually, she only helps with extra hands getting something we forgot or soothing Ali with a pacifier laced with sweeties. We found a new, better place to do it daily with a plan of how to integrate dressing changes into our family's daily routine. Eventually, once Ang is back working, we'll put Ali to bed in the evening, then change Bella's dressings and put her to bed. Just having that kind of rather simple plan gives us the vision that even while Bella deals with this unusual disease, we can somehow integrate her needs into a relatively normal home.
Btw, we just got 3 hours of sleep for the first time in 2 days and it was AWESOME. :)
Having to be patient to wait 3 days or so to see if the new formula supplement kicks this reflux was killing me. Actually, just about every facet of this experience was killing me. I think as I drove to pick up Ali from daycare this evening, I hit my rock bottom. But guess who was sitting at the bottom waiting patiently? God.
I realized that I have been trying to control Bella's disease and ultimately her fate. I thought, "If I just get enough people praying for her, I can cause her to miraculously get better." It became about me. As a parent, of course I want her to get better and I am praying, as all of you are, for that miracle. And yet, in that moment, I understood that, "Yes Tim, there are things at work that 1)are not about you and 2) are more powerful than you." Each new blister mocked me into realizing I am powerless over controlling her.
In that moment, I surrendered to EB. I have a beautiful, magical, miraculous daughter, and she has EB. Now, she may not have it her whole life, and yet she may. But either way, I'm walking down whichever road by her side grateful just to have her.
That's when God's grace flooded me with peace. The peace I have been without (with tiny exceptions) since May 27th. It's a conundrum; in order to have that peace I so desperately needed, I had to give up asking for it.
Then it showed up.
I'm sorry to steal the spotlight a little here from Bella, but it is a big day for me because since that moment, I have been at peace, and enjoying my daughter and the rest of my family immensely. I no longer have to put on the strong face to write this. In fact, I went to bed content, as did Ang, and we forgot to check the update page! (Sorry ... we had been up for 2 days straight ...)
This is a long, moment by moment journey, and thank God for it, because now I see Ali's perfect skin, and realize what a miracle every action, every activity, every game played...truly is. I got to fall in love with both daughters again today.
Last, you have to see Ang in action to witness the power of woman. She is Rock solid and cool as ice. A stronger woman I do not know and I cannot imagine being side by side through this without her...not to mention that she dropped just under 30 pounds in 2 weeks post-op. She is healing and strong, not just for herself, but for her children, and her overtly sensitive and emotional husband. She is the foundation and the mortar of this home. Thank you, Angelique.
Keep it coming, your prayers make moments like today possible.
Here it is again. Please hold this vision with me:
"One day Bella will look back 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."
We love you all. Thank you for walking this journey with us.