Sometimes I think I hear her voice...

Danielle slipped her hand inside mine as we walked down the sidewalk. Looking at the ground she said quietly, "Sometimes I hear a voice in my head. It's not yours or Daddy's. I think it might be Amanda's." 

She stopped walking and looked right into my eyes. "When they fix her mouth will she be able to talk to me?"

It almost broke my heart. I hurt for both my girls. For Danielle who so desperately wants a typical big sister. And for Amanda, trapped in her body with no way to communicate with us.

I get the same question from my father and my friends. "Will the surgeries help Amanda to finally talk?" I hate to give them the painful, truthful answer which is quite simply,"No."

Amanda is about to undergo a series of craniofacial surgeries intended to improve her ability to breath, eat and hear. No one  has given us any reason to hope that these will allow her to speak. We aren't entering into these surgeries casually. They are not intended as cosmetic, rather they are intended to improve and extend her life.

For years Amanda has had sleep apnea. We hear her struggling to breathe at night. Sometimes it grows quiet and then we hear a sudden loud gasp, as she resumes breathing, having briefly stopped for a few seconds. It sounds like someone surfacing from deep underwater, sucking in air greedily. It is terrifying no matter how many times I've heard it over the years. 

As an infant Amanda had difficulty feeding. She was fed through a tube in her nose while she was in the neonatal intensive care unit. When she came home she had difficulty nursing and we had to bottle feed her. I remember being accosted by an elderly man in the grocery store while I was purchasing formula. He scolded me for not breastfeeding my daughter. I wanted to shout, "If I did she would have starved to death by now!" Instead I ran crying from the store and bought formula at a CVS across the street.

Only recently has she been diagnosed as having most of the symptoms of Pierre Robin syndrome (PRS). Pierre Robin syndrome (or sequence) is a condition present at birth, in which the infant has a smaller-than-normal lower jaw, a tongue that falls back in the throat, and difficulty breathing. Amanda's symptoms include a high arched palate, small jaw with receding chin, repeated ear infections, a tongue that is large compared to her jaw, breathing difficulties, choking episodes (as a young child), feeding difficulties, and low blood oxygen levels.

Oddly my fight to give Amanda a "normal" life may have contributed to this delayed diagnosis. If she hadn't learned to eat and was forced to survive on an NG tube doctors might have taken more notice of  the structure of her mouth and jaw. Another contributing factor was  that her genetic condition was so rare that there was no frame of reference for us as parents or for her medical providers. When Amanda was sent for genetic testing the geneticist had assume based on her cardiac anomoly and facial characteristics that she had velocardiofacial syndrome. If the genetics screening had confirmed that diagnosis Amanda probably would have been treated for PRS years ago as it is fairly common with that syndrome.

Danielle's question made me remember. Years ago, when I still had hope that Amanda would speak, I used to hear her in my dreams, too. I miss her dream voice almost as much as I long to hear her true voice. I miss the hope I had when I dreamed those dreams - that I will some day hear her speak.