January 17, 2007

January 17, 2007 at 03:19 PM CST

Wednesday…

“Be thou my vision,
O Lord of my heart;
Nought be all else to me
Save that Thou art

Thou my best thought
by day or by night,
Waking or sleeping
Thy presence my light”

This song has come to hold deeper meaning for us since the day we understood that Abby would be blind. Even more so as we listen to Ginny Owens sing it at the beginning of one of her albums… you see, Ginny Owens is also blind. “Be thou my vision, O Lord of my heart.” Blindness was and still is in many ways such unfamiliar and foreign territory for us. I remember crying together in the parking lot of the UT hospital after Abby’s 3rd eye surgery knowing that she would never see us smile at her, or blow her kisses. Abby’s future seemed hopeless and dark that day. It was only one of many such days for us. But our God who is rich in mercy has turned those tears into joy.

Yesterday we had our meeting with the Deafblind team from the University of Alabama Birmingham to discuss Abby’s future. These are five amazing women who have devoted their professional lives to helping children and their families who are deafblind. They have fallen in love with Abby and spent over 3 hours with us talking about her medical history, her family, her friends, her school and our hopes and dreams for her future. Combining their experience, training, knowledge and compassion they showered our family with encouragement and ideas to help Abby grow! They highlighted Abby’s strengths and were excited about her potential to learn ASL. Communication has been one of our biggest struggles. We’ve been working on ASL with Abby for a while now and these ladies were thrilled with her signing abilities. They told us that “Abby is a smart little girl.” They will never know how much that statement has lifted us up! Several of these women were very familiar with Dr. Christine Roman who we saw at Penn State Hospital back in Sept. for a vision eval. She is a specialist in cortical vision impairment and also practices as a developmentalist for NICU grads. What a gem she is! They were excited to read Dr. Roman’s recommendations and suggested using them along with Abby’s Future Plan that we developed together as a “team” to make her IEP (Individualized Education Plan) at school complete.

Abby’s IEP meeting is scheduled for Jan 25 at 8 am. All of Abby’s teachers, therapists and special ed coordinators will be present for our meeting. Two women from the Deafblind project will be attending with us to help facilitate and explain the very special needs of our child who is deaf and blind. Their presence in our lives makes us feel as though we have hit the jackpot! So many questions answered, so many fears minimized… Finally, help as arrived!
Nothing can compare to the feeling you get when the Lord lifts a heavy burden from your chest and you can finally breathe fresh, sweet air. That is the best way to describe the way we feel today.

Thank you for praying for success for Abby. Please continue praying for her school system that they would be receptive and open to learn more about Abby’s needs. That we will be able to explain things clearly and they would be willing to implement all of the suggested interventions with out reservations.

We love you all!

Ps. There is a very special “Abby Movie” that Aunt Christy made for me that we would like to share with anyone who wants to see it.

Go to:

http://picasaweb.google.com/myhullfamily
Click on Abby’s Movie and download to view

WARNING: Very Large File!! For those of you with slow connections this will be a bear. Come see it on our computer instead!