he smiles politely back at you..you stare politely right on through

Right now I am sitting in front of the computer listening to the buzz of the feeding pump rolling as Ivey ‘eats’ (a monotone sound that has become part of our existence) and listening to my ipod favorites on the computer, while singing with Ivey as she sits here in my lap. That is the extent of what sounds I am paying attention to. So let‘s switch gears, let’s do this blog from Ivey’s seat. From her perspective, you must include the tap tap tap of the keys of the computer, the clicking of the dishwasher as it completes its drying cycle, the creek of the rocking chair on the hard wood, my not-so good singing, and the buzz of a weed eater somewhere. We are listening to How To Save A Life by the Fray, up next will be Ruby by Kenny Rogers (it has some great sounds) and then God Bless The American Housewife by SheDaisy (this is just a good one for any SAHM!).

The first 24 hours following Ivey’s birth are lost from me, even today. Matt reassures me that it is better that I not remember yet and when I do, the day will be long. The guilt of not remembering the first day of my daughter’s life is at times unbearable. There are a few memories, but they are extremely blurred. I am not even sure that I could put those memories in the correct sequence of occurrence. I do recall Ray coming into the hospital room. I have no idea how long he was there, but I remember him. I also remember him saying the neonatologist will come to speak to you.

For the first time in my life, I felt pure Fear. Matt and I looked at each other. If his face was a reflection of mine, I now know what Fear looks like.

The hospital door opened. A woman walked in the room. I am most positive that it was a somewhat extensive conversation, but I heard only three words,

“Ivey is blind.”

Dr. Laura broke the news. The woman who sat in front of me instantly became my life-line to my daughter. Somewhere down the hall, there was a 5 lb 11oz baby girl in a dark unfamiliar world, scared. Her only safe haven was missing.

Anophthalmia is a rare disorder that develops early during pregnancy and most often is associated with other birth defects. In cases where babies exhibit anophthalmia, there is an absence of one or both eyes. Both of Ivey’s eyes are missing, this is called bilateral anophthalmia. After examining Ivey and performing an ultrasound on each of her eyes, the ophthalmologist concluded that she is absent of both eyes and optic nerves. Therefore, there is not a treatment that will restore her vision. She will always be blind.

In the space where Ivey’s eyes should be, there is some residual tissue. For that reason, the socket space is not completely empty. The tissue looks somewhat translucent; it is not white nor does it have any signs of a retina. Because the eyes were not developed, her eye sockets are smaller than average. Her eyelids are also small due to the fact that they did not have pressure from the eyes to cause them to expand. The conformers will help to correct these problems. Ivey does have eyelashes. Like Knox and Walker, she has long dark lashes. Once the conformers do their thing and she receives her prosthesis, she will have big beautiful eyes. Matt and I will have one very tough choice. What color will Ivey’s eyes be?

(New song….If I Needed You by Don Williams and Emmylou Harris.)

From Ivey’s point-of-view, she wonders why I keep cramming these hard conformers into her eyes. Nevertheless, she keeps rubbing them out. Do you think she is trying to tell me something? Yes, she does cry when I replace the conformers in her eyes; however, she cries more from having her hands being restrained and from holding her head. The conformers are painless. Ivey returns to the ocularist every 6 weeks for a larger pair of conformers. She will receive her first pair of prosthetic eyes near her second birthday.

(Beep…Beep….Feeding pump needs to be turned off. No boy sounds, due to the fact that they are at First Baptist right now.)

So, now for ‘The Big Question’ looming on everyone’s mind, “What is life like with a blind baby?” The first couple of months - terrifying, then slowly, common sense begins to kick into high gear. She is just a baby, and not too much different from the boys, with the exception of the whistles and bells jammed in every cavity of her face. She can not talk, crawl or walk yet, so she sits just like any other baby. She does not turn toward sounds or voices, but she does not have the visual cue to do so. However, Ivey does get very still as she listens. We talk to her as we enter the room so she is aware of our presence. We tell her when we are going to touch her so not to startle her. We are learning a new lingo too. Now, we do not say, “Knox ‘show’ Ivey your picture”. We say, “Knox ‘describe’ your picture to Ivey”. Or, if the boys say, “Ivey watch me”, we redirect them to narrate what they are doing. When I talk to Ivey, I hold her close to my face so she knows when I am speaking directly to her. Certain people have become familiar to Ivey; she behaves differently around the people she recognizes. Sounds are important, but so are her other senses.

Ivey loves to get naked! Whenever I start to undress her for baths or to change her clothes, she gets the biggest grin! I think it is the ‘touch’ she loves. When we were working up to leave the NICU, Konda kept saying, “Now girl, you put that baby in the car and go. Make her part of your life, don’t become her only life." Well, we are working on that one; unfortunately, Ivey is not a fan of the car - yet. When she is upset, holding her hands will calm her, some of the time. She and I have stood in the rain so she knows its smell and feel. The neighbors probably thought I was crazy. On September 14th a new milestone was marked! I was holding her close and talking to her when she reached out and touched my face and smiled! She is finding comfort and security in her surroundings.

(Fast Cars and Freedom…Rascal Flats. Washing machine turns to spin cycle.)

Little by little, I am finding information on anophthalmia. Most of the information is through the internet. There are an only a few organizations and I have enrolled Ivey into them. Amazingly, we do have a family member who is able to supply us with information about visual impairments, even anophthalmia. We have also entered Ivey into a program called Georgia Pines, which is for visual and hearing impaired children. As we progress with Ivey, they will come to our home and give us suggestions to help improve Ivey’s world. Believe it or not, the doctors and organizations have not been my best resource. My most valuable resource has been a group of parents I found on the internet. It is a group with children whom all have bilateral anophthalmia. One mother I speak with is from Ireland. Finally, I have been able to have a conversation about conformers with people who know more about them than I do!

How appropriate, we are winding this blog up with Goodnight Elisabeth by the Counting Crows.

Ivey is a very happy and content baby. I miss her vision for her - she does not grieve for it. I find myself running my hand over the plaque to the restroom in restaurants or stores if they are in braille. The first day of her life may be a blur, but everyday since then has been a miracle. Maybe when God healed the blind he did not give true sight, but the greater ability to see the world as it is.

They say the eyes are the window to the soul. I do not believe that anymore. It is a smile.