Before my daughter was born, I already had a vision of who she was going to be, of what I wanted for her life. She would be happy, healthy, intelligent, compassionate, and fiercely determined. I wanted those things for her, and many, many more.
I think it's natural that we all envision our child will be born "perfect", that they will have 10 fingers and 10 toes and that all their organs will function as it is intended. But for some parents, this isn't the reality. I by no means mean that any child born isn't a blessing, nor do I mean they are unlovable or imperfect for us. Our child is exactly as they are meant to be, they are perfect, they are precious, they are ours. In some ways, I believe that lulls is into a sense of fantasy, a sense that our child is impervious to pain and illness. If we just love them enough, they will never have to endure such things. We can protect them.
I, too, lived in this bubble. I lived in it for 3 glorious days, until the seeds of reality were sewn. For at 3 days old, my daughter failed her routine newborn hearing test. When we hear the word "routine", it can wrongly lead us to believe that nothing bad can come of it. That it's merely a formality. That isn't the reality.
When the doctor told me my daughter had been "referred" on her hearing test, she assured me there was nothing to worry about. Again, it was just routine. At 5 days old, this test was repeated and my daughter was again "referred" for her hearing. I am a first time mama, and I had absolutely no idea what this meant. All I knew was that it didn't fit the perfect world I had built for myself and my daughter. This wasn't part of the life I had dreamed for her.
A total of 7 excruciatingly long tests in 3 different cities later, and it was confirmed: my daughter has a permanent hearing loss in one ear. Even as the audiologist explained it those few short weeks ago, I didn't really believe it. Surely they were talking about someone else's child. Surely not our perfect baby girl. We were given pamphlets to read about accepting the diagnosis and what to do now. I smiled and thanked the specialist politely bit again, I was sure that I had slipped into an alternate universe. Surely they were talking to somebody else.
As the weeks passed, I fielded phone call after phone call from specialists and support groups. I listened politely to their advice. I was positive and proactive and I seemed to have it all together. Then suddenly I realised that decisions had to be made. Decisions about my daughter and her future. Suddenly, everything started to become real.
I realised that I hadn't allowed myself to grieve the diagnosis, and the loss of the life I thought that we would have. I hadn't allowed myself to feel the true weight of what the diagnosis meant. I hadn't accepted that my daughter didn't fit the cookie cutter mould that society portrays.
I have been left to wonder what the diagnosis means for the rest of our lives. I am already organising speech therapists, learning facilitators, educators, support groups, play groups, mentoring, teleschools, sign language classes...the list goes on. In fact, today we are visiting a genetic counsellor and a genetic specialist. The diagnosis of my daughter's permanent hearing loss has ramifications not just for her future, but for ours and that of her future siblings. There is also the knowledge that many children with permanent hearing loss also have other syndromes, diseases, challenges. Or that future siblings may suffer a greater or lesser level of hearing loss - or perhaps none at all. The thought terrifies me, but not enough to deter us from having more children. It is just another challenge that we have to face in our lives. That challenge, however, does not outweigh the love I hold for my daughter, nor the love I already hold for the child or children yet to be.
Looking at my daughter sleeping beside me as I write, I find it hard to believe that there is anything "amiss". She looks perfectly healthy. Unfortunately looks can be deceiving. While her condition is in no way life threatening, it is life altering. For her and for her family. I need to give myself time to accept this, and to grieve the cookie cutter life I shamefully deluded myself into believing could be a reality. I need to grieve the life I longed for and accept the life that is.
My daughter is my greatest blessing. She altered my life the moment I realised that her life had begun inside of me. This blog, like my life, is dedicated to her. For you, she is perfectly imperfect, just like me, and even after I breathe my last breath, I will love her still.
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