Cytomegalovirus 
Cytomegalovirus (CMV) is a herpes-type virus passed through bodily fluids. It affects young and old alike. One way to catch it is through sexual intercourse, but it can also be passed along quite innocently by simply kissing someone who has the virus or drinking from his/her unwashed cup. CMV's effects range from unnoticed to devastating. And if you have never heard of the disease, don't be surprised. Awareness of CMV and information about the virus is rather limited even in the medical profession.
I would be blissfully ignorant of this malady today if it were not for my second daughter. She was born with congenital CMV, which in her case involves a variety of complications, from epilepsy and asthma to a raft of less familiar disorders (nystagmus and diplopia, for example) that have sent me scurrying for my medical dictionary on several occasions. But the most profound symptom is developmental retardation. She could not stand or walk until past age two. She could not say her own name until she was four. As a five-yearold, her physical and mental skills were only equivalent to a normal child's at age 32 months. Even today, at six and a half, she is struggling to master toilet training. Her developmental delays mean she must attend special education classes and will not be able to join other children her age in the regular curriculum at school.
It would be easy to view the situation as tragic, but this child is truly a blessing in my life. I watched her take her first step not once but hundreds of times. She may be slower than others in most ways, yet there is a spirit shining through her which is rarely so evident outside the cradle. On weekends, I take her to the park to play on the swingsets. She pulls me by the hand to the convenience store to buy chicken nuggets and cola for lunch. Afterwards, we will dance and sing along with videos of Barney (the purple dinosaur). These are times of happiness, not worry. Hers is a childhood expanded, not disadvantaged. She may never grow up to be a rocket scientist, but she will grow up to be that unique person that only she can be in this world. And anyone who sees her bright, endearing smile knows immediately that this is a very special little girl. Several of of my poems have been inspired by her. You might even see her birth presaged, in an odd way, by my 1982 short story An Unarranged Marriage.
In my efforts to better understand this course my daughter is on, I've discovered quite a few resources, including the Texas Children's Hospital of Baylor University, a newsletter published in England for parents of CMV children, and several references on the internet. If you are interested in knowing more about CMV, here are two locations to get you started:
Cytomegalovirus - Website links, contacts, and more information on CMV
There is also an excellent online support group for parents of children with congenital CMV. Following is a discription of the list they have created and instructions on how to subscribe:
This list is also a forum to learn from each other, share our frustrations
and rejoice in our triumphs.
This list will be a place to discuss any and all of the complications of
CMV...To list a few: intracranial calcification, Cerebral Palsy, seizure
disorder, deaf, visually impaired, profound delays and MR, microcephallic,
mal-absorption difficulties, feeding difficulties, CMV retinitis. There are
many other handicaps associated to CMV, all of which are open for discussion.
Here we can discuss our children's accomplishments and defeats, knowing that the audience includes others who know what we are going through. We can also get some idea of how others address specific problems/concerns with feeding, learning, schools, medical resources, techniques and equipment, as well as describing the problems to friends and family or just coping.
To subscribe to the CMV-L, send the following command to
Majordomo@avenza.com. In the BODY of the email: subscribe CMV-L yourfirstname yourlastname
Congenital CMV - A solid introduction to the virus, its symptoms, diagnosis, treatment, and prevention
The purpose of this list is to create a common ground - for parents and caregivers of children with congenital CMV, their caretakers, therapists, doctors and nurses who work with our children, those with CMV, and those researching ways to conquer CMV.