Friday, June 12, 2009

Update 0601109 "27:41"

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.


  1. From Care Pages Site:

    Posted Jun 12, 2009 2:08pm
    by adrienne sandusky

    Posted Jun 12, 2009 1:47pm
    by Pete McGovern


    After reading you post this morning, it reminded me of a similar story that I had read a couple of years ago, and I wanted to share it with you.

    by a CHOC mom

    When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

    After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

    "Holland?!" you say. "What do you mean Holland!? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

    But there's been a change in the flight plan. They've landed in Holland and there you must stay.

    The important thing is that they haven't taken you to a horrible, disgusting, or filthy place. It's just a different place.

    So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

    It's just a different place. Sometimes it's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

    But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

    And the pain of that will never, ever, go away... because the loss of that dream is a very significant loss.

    But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

    We love you guys and just wanted to Thank you for allowing us to share this Journey with you.

    With all our continued love, support and prayers

    The McGoverns

  2. More from Care Pages:

    Posted Jun 12, 2009 12:38pm
    by Jennifer Jenkins

    Tim, I remember our last conversation, the Sunday before Bella was to be was about SLEEP! or the lack thereof. I have been thinking, and of course, keeping Baby Bella and your entire family in my prayers daily. She is such a precious little bundle, I love all the pictures you have shared with us. Congrats to you and Angelique and we can't wait till the first Sunday, we will get to meet Baby Bella! Hope you get a few more hours sleep tonight!
    Posted Jun 12, 2009 11:49am
    by Barbara Dailey

    Glad to know tht things are settling down a bit. Now you know - God waits for you, wherever you are - We all know that caregivers need prayer and help also - and support to stay strong. So when you break down, its okay - God is down there waiting for you - Love to you and your beautiful family - Walt and Barb
    Posted Jun 12, 2009 11:37am
    by Lynne Boschee

    Tim -- Tears rolling down my cheeks as I read your post. It is the perfect expression of love. In the midst of everything you are dealing with, you made me present to what love really is, and what power really is. Thank you. We are holding you in our hearts, keeping your vision for beautiful Annabella present and sending you love.
    Posted Jun 12, 2009 11:09am
    by Carolyn Rhinehart


    In reading what you wrote about Angelique, all I can say is that truer words were never spoken. Angelique is a strong intelligent women and I am proud to have her as my daughter. She has an inner strength that few people see. I have seen it all her life. You are very lucky to have her as your wife and we are pleased to have her as part of this family.

    Posted Jun 12, 2009 10:52am
    by Steve Williams

    Love you guys,

  3. More from Care Pages:

    Posted Jun 12, 2009 10:23am
    by Tedd Johnson

    Dear Ringgold Family,

    I strongly believe that everything happens for a reason, we're just not always meant to know the reason. Your ability to recognize this is a testimony to your faith. "Faith unto a mustard seed may move mountains."

    Having just recently dealt with a newborn with a severe medical condition, I have such great empathy towards you and your family, my heart truly goes out to you.

    It is in my prayers that Bella may make a complete recovery. I too look forward to hearing the day where your daughter will look back and find that she has made a complete recovery.

    Love and Peace,
    Tedd Johnson
    Posted Jun 12, 2009 9:47am
    by Robin Setto

    Dear Tim, Angelique, Ali and Bella,
    The Almighty has his own purposes. Tim, you and Angelique are amazing. Revelations such as yours today are so peaceful and give you room to grow even more. You are both learning so much in so many areas, that is a gift! Our intense prayers continue and your vision will be.
    Michael and Robin Setto
    Posted Jun 12, 2009 9:11am
    by karyn reddick

    Tim and Angelique. I have been keeping up with your journey on the care pages. Was so touched by your reflection this morning. Those times when God feels near are so precious. I wanted to share a poem I wrote when God felt very near. Perhpas it will help you to hang on to this nearness in the midst of such challenges and such incredible love. You and your little family are changing the world:

    God's Got My Back

    Happiness comes supported
    Known but not always stated
    Hemmed in behind and before
    Independence can be overrated

    It can be understood in families
    or grossly unavailable
    It can come from unlikely places
    May or may not be sustainable

    I feel a yellow quilt
    wrapped comfortably around me
    Not too tight or too loose
    Fabric not meant to bind me.

    Put there by loving arms
    concerned for my well-being
    Not holding me in place
    the added strength is freeing

    I'm sure if I stumble
    or perhaps even fall
    the arms reappear
    I don't even have to call

    There won't be a lecture
    I won't be derided
    for mistakes that I made
    or situations left undecided

    I'll be set upright
    again and again
    In tragic situation
    God's always my friend

    I don't need to test it
    it's a fact not perception
    God's got my back
    from every direction

    May God continue to hold all of you in the palm of God's hand. Karyn Reddick
    Posted Jun 12, 2009 8:33am
    by Michael Cassens

    If you haven't checked the front porch, hospital grade soothies await you.

    And since I told you that I shared your experience with my students, here are some of the responses. These are all Psi Beta kids who saw your presentation from last month (man, does that seem like a year ago or what?).

    Sean Kennedy at 12:46am June 11
    Tim is showing incredible strength throughout this trial. His words, music, and overall approach on these websites are incredibly moving and I feel compelled to help in anyway I can. I urge everyone who is capable to make a donation in support of Tim and his family, including Anabella.

    Christa Nicole Call at 1:00am June 11
    My prayers are with Bella, please let your friends know that I'm going to ask my friends and family to pray for her as well.

    Neda Moayedi at 5:49pm June 11
    I cannot imagine what they must be going through. I'm sending positivity and love to Anabella and family....

    Patty Johnson Powell at 8:14pm June 11
    My son just finished a report on the largest human organ, the skin and we came across this very disease this week. It breaks my heart, I will be praying for Bella, her family and her caregivers. Godspeed!