I was sick for all 9 months while pregnant with Emma. Even so, I was thrilled to find out that Emma was a girl! I think it's great for a girl to have a sister and I was so happy Julie would get to have a sister!
Emma failed the newborn hearing screening in her right ear. Everyone told us it was probably fluid in her ears and not to worry. So, I didn't worry at all and thought that the worst thing we would be told is that she is deaf in one ear and that she would learn to compensate with hearing out of her other ear. After about a month we had her hearing checked again and she didn't pass either ear. Many tests later we found out that Emma was deaf the day before Thanksgiving, when she was 6 weeks old. When she was 3 months old we found the cause of her deafness was a CMV exposure, and that set us on our path of where we are today.
I was sad, angry and felt pretty guilty that it was me that passed the virus onto Emma. I did a lot of crying but eventually realized that I'm completely and helplessly in love with Emma and that we'll do whatever is necessary to make her life easier and sitting around crying and feeling sad would not get us the help we needed. Chris was upset, too, but handled the whole situation better than I did. He has always had that attitude that we'll make sure Emma is the best Emma she can be and that this must be the path God meant for us and we will all be just fine.
I prayed a ton. I still do. I also started reading blogs by parents, joined a couple Yahoo Group list-servs, and sought out other parents in the community with special needs children.
Emma's official diagnosis is Congenital CMV resulting in profound hearing loss (Emma is deaf) and spastic quadriplegic cerebral palsy. I had never heard of CMV before I had Emma and am now on a mission to inform every person I know about CMV. Please visit Stop CMV for more information on how to prevent CMV-related birth defects and spread the word to anyone you know who is considering or is already pregnant.
Emma receives the following interventions: Physical Therapy, Occupational Therapy, Speech Therapy, Auditory-Verbal (for her cochlear implant), Early childhood education, Therapeutic Riding, and Craniosacral Therapy.
Emma is an amazingly happy little girl who inspires everyone around her.
Right now we take it one day at a time. Emma grows stronger each day and we hope that we will have to child-proof the house soon! We also believe that her cochlear implant will give her access to spoken language and that she will start to communicate through words in the near future.
My advice to other parents is to enjoy your child for the unique qualities they have and live in the moment. It's easy to get caught up in the what-ifs, the milestones not met, the unknown, but it's so much more rewarding when we let go of our expectations and enjoy our children for who they are.
Resources I recommend: John Tracy Clinic, CICircle, and CP Moms Yahoo group.
2 comments:
Emma is so beautiful!-- and you are a wonderful mother! Thank you for sharing your story!
My daughter Katie, who is now 14, was also diagnosed with Congenital CMV which also resulted in profound hearing loss and spastic quadriplegic cerebral palsy. Looking at the pictures of Emma she reminds me so much of Katie! My girl is an amazing, happy girl who is an incredible fighter every day and still keeps on grinning. She has just had a g-tube placed in December (which I was terrified of but now realize we probably should have done it sooner) and she will be having hip surgery in two weeks to correct a dislocated hip. I always figure if Katie can be happy then the rest of us have no excuse! Your daughter is beautiful and it is always nice to read about other parents who face the same challenges.
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