California State University Northridge

Real Stories about Identification and Early Intervention

Athena Troy, My Metamorphosis

Someone once told me that "the best way out is always through."

Becoming a parent is certainly a life changing experience for anyone.  Little did my husband, John, or I know how life changing our journey into parenting would be.  Our daughter, Eve, was born on December 29, 2010.  I had a perfect pregnancy and had no idea we would encounter any of the challenges we have been confronted with since her birth.

During the first few agonizing months of Eve’s life we discovered she must be 100% tube-fed due to an inability to eat or drink, she is delayed in both gross and fine motor abilities, she has an eye condition that is vision-threatening and extremely difficult to manage, and she is also profoundly deaf.  Our  discovery of each of these issues was slow and excruciating. 

Eve's doctors could not answer the majority of our questions about what was going on with her. We did not know what was wrong, what was the underlying cause of these problems, and we did not know what her prognosis would be.   All we could do was attempt to deal with each issue as it was discovered.  It was the darkest and most frightening  period of my entire life.  There were many occasions when I could not stop the tears from flowing and did not see how I could go on.
Ironically, the thing that made these experiences so challenging for me was my own hard-headedness.  I was unable to come to terms with and accept the truth that I have a special needs child.  I fought to accept each of her issues with every part of my being.  I wanted to fix her.  I wanted the doctors to fix her.  Out of desperation and frustration, I pushed her to do things she was physically incapable of doing.

This state of mind, however, was not sustainable for me.  I was headed towards depression and self-destruction.  I knew that I had to figure out a better way for myself and for my family.  Over time, and through many tears, I slowly came to accept that I simply do not have the ability to "fix" her problems and I had to let go of trying.  I came to realize that her life experiences will shape who she is and will give her a truly unique perspective in life.  I am learning to accept who she is and what her challenges are while at the same time hold onto the hope that, with the support of her family, her life can still have joy, purpose, and meaning.

Someone once told me that "the best way out is always through." It is a quote from a Robert Frost poem  which I have come to believe to be true.  Eve is my child, the love of my life, and despite everything she has brought me more joy than I ever thought imaginable.  I have transformed my own hard-headedness away from a constant angst against the reality of Eve's medical situation and into a determination to never give up on her and to always believe in her.

This belief is helping her to overcome many of her challenges.  When Eve was 20 months old, through my own research and inquiries to numerous doctors, I discovered that all over her issues are explained by a brain malformation called Pontine Tegmental Cap Dysplasia ("PTCD").  The condition was identified in 2007 and there are only about 20 cases reported in the medical journals.  The condition is non-progressive and there is a huge variety of outcomes and possibilities.  Because there are so few reported cases, there is little known about her potential.  I see this as a good thing because, as is true with most special needs children, no doctor or educator can truly predict her outcome.

We chose to give Eve a cochlear implant, although she is not progressing with it well due to a small auditory nerve.  We also have chosen to learn sign language and to immerse her in sign language instruction at home, school, and day care.  She now knows more signs than I can count, can communicate all her needs, and she is putting two signs together.  By all measures, she is a bright, interactive, and loving child.  We are managing her eye condition and have hope that we can maintain her vision throughout her life.   She is learning to walk with a walker.  Although she still cannot eat, she is getting the nutrition she needs and she is growing and in good health. 
Interestingly, because of all of Eve's other challenges, her being deaf is honestly at the bottom of the list when it comes to our concerns about her future.  When John and I would attend events in the community for parents of deaf children we would both find ourselves feeling jealous of families whose only issue they were dealing with was their child's hearing loss.  Eve's other challenges have given us a lot of perspective on what her deafness really means.  I believe that because we are giving her full access to language with sign language, we are giving her the capability to overcome her other challenges and the ability to move beyond them.
    
Athena Troy’s blog is at http://allaboutevetroy.blogspot.com/.