Bella's Blessings: Fathers Day

Sunday, June 21, 2009

Happy Father's Day

Happy Father's Day to all you fathers out there!

Bella blessed me by SLEEPING IN this morning. Not only did she sleep through the night, but she slept right up to her 8:30 feeding. But her gift was when she started cooing this morning in her cradle. The only noises we usually hear from her are shouts, screams, and cries, but this morning, we got a little gift. I wish I could have video'd it. I'd watch it over and over again to remind myself there is a happy soul inside that angry body right now.

Blisters continue to heel, though a couple have returned exactly in the shape they had just finished healing. Bella has a new one on the back of her right middle finger that JUST healed...and now the whole process starts anew. Another three weeks of wrapping. However, Bella's face and mouth look better than EVER, and she EATS like there's no tomorrow. This is very important for an RDEB baby. Malnutrition is one of the big killers.

My thoughts on Father's Day take me back to my little country church, St. Patrick Church in Redding, CT. Every Father's Day, our Pastor, Fr. John Conlisk, would give his annual Father's Day sermon. I'll never forget his last line, "...because while any man can be a father, not every man is a daddy." (or something to that effect) For me, while yes I am a "father," next to being a husband, being a daddy is the best job of my life. The fun, the connection, the sense of purpose, the every day miracles...watching them develop and unfold before your very eyes...the wonder and awe of it all...awesome.

I also think about Father in Heaven today and the unending love, patience, abundance, forgiveness, and guidance He provides to all who are willing to listen no matter how many times they have ignored. I think about my own finite patience, and I marvel at His ability to endure all and still shower love and abundance with joy upon all who ask for it. God is my hero.

Growing up, I remember stories about "Manna from Heaven" and thought that God gave us gifts right out of the sky. Since then, I've learned to recognize that God gives us gifts through each other, through every day faces and people. There is no choir of angels announcing the arrival of more of God's gifts. Just a phone call, or an email, or a chance meeting in public, or a card in the mail. We are being fed (literally) by so many different people, including family, friends, our entire church, and Ang's work team, that we barely have enough room in the fridge and won't need to make a dinner (or lunch) for the next month. THAT is MANNA FROM HEAVEN.

Watch Bella's video: http://www.youtube.com/watch?v=VZ9MXSCfMzw

Purchase her song or make a donation above.

God bless each of you for your love and support. You are healing our daughter. Thank you.

A Little About Bella And EB...

Anabella Ringgold was born on May 27, 2009 with a rare skin disease called Epidermolysis Bullosa, or EB. She had the rarest form, called Recessive Dystrophic, or RDEB for short. A single gene in her body responsible for making the anchor that hold her skin to her body was defective. This caused blisters and wounds to occur all over her body, including her mouth and entire GI tract. Any kind of friction, rubbing, bumping caused blisters to form, or it caused her skin to shear clean off. Life expectancy is under 20 years due to risk of malnutrition, infection, or squamous cell carcinoma. Although pain and discomfort was constant, Bella remained bright and cheerful, bless her heart. Though currently there is no cure for EB, Bella took place in a clinical trial at the U. of Minnesota where through Bone Marrow Transplantation, she grew her sister's skin on her body over time. Unfortunately, she died from complications of transplant on October 11, 2010. This is her story, and our story of how we cope as a family with the journey we are on together.