Thursday, May 17, 2007

The One and Only

Ethan and I recently were invited to be guests in an ASL class at Ohio University. The students have studied deaf culture and have touched briefly on the cochlear implant and its significance to the deaf community. They were very interested in Ethan's implant as well as his sign language abilities. They asked informed questions and showed a genuine interest in my experience as a hearing parent to a deaf child. I explained that I feel we've approached his deafness from both a medical point of view (hence the implant) as well as a cultural point of view. We're very interested in and respectful of deaf culture, especially the potentially transformative affects of cochlear implants on that community.

What I wasn't expecting to face in that class was the question of whether or not I would be interested in having more children. I believed the context of the question was based on the fact that Ethan was born deaf. I found it very hard to formulate an articulate answer, one that aptly expressed my feelings without making it seem as if having a deaf child was the end all of parenting. Inside, I'm thinking HELL NO, but in reality my reasons for wanting to stop after Ethan has nothing to do with his deafness. I think having another deaf child would seem much less daunting and maybe even exciting. That's the darned truth.

Ethan's deafness aside, he is a very high maintenance kid with many issues that involve a lot of patience, time, investigation, and above all, a willingness to accept that he will defy nature at every turn. For instance, he doesn't really need sleep - or food actually. At least that is what he thinks.

He needs all that we've got to muster. He is surrounded by people who adore him and work hard to meet his needs, but only because he has parents who can put all they've got into his care. Dividing our attention would be next to impossible. Maybe I'm just really in touch with my own limitations. I am in awe of people who can do it, whether their children are "special needs" or not. And single parents? They should be basking in the glory that is only afforded to our super-star athletes.

One of my favorite writers in the blogosphere is Rob, father to Schuyler. He writes very eloquently about this topic and many others, I highly recommend checking him out. This particular entry I'm referring to is titled Secrets and can be found at his blog, My Beloved Monster and Me. Another entry of Rob's that is beautiful and touches more on the experience of raising a "broken" child is titled Shepherd's of the Broken and is well worth the read.

6 comments:

Anonymous said...

just to let you know a little bit about the chances if you would have another deaf child would be 50 50 because you and you husband are fully hearing which makes you dominant and since you each pass only half of your traits to your son he got your ressive traits which makes im ressive dominant which therefor if her were to grow older and have a child with a woman that aslo carried the ressive trait like you and ethans dad he would have a 75% chance of having child with hearing loss you need to ask a profesional about this because i know my stuff but the way i worded it seems weird bit just trust me on this one

Heather said...

Dear anonymous,

The cause of Ethan's hearing loss is not genetic. That was the first test run on him at Children's Hospital. He was subjected to a nasty virus called CMV while I was pregnant. One of the hallmarks of the virus is being born deaf. So the chances that my husband and I would have another deaf child are extremely slim.

Anonymous said...

well i dident understand your whole story i guess thats bad on my part what is cmv i want to understand more

Heather said...

Hi again anonymous (you mystery person you),

This quote is why I said that Ethan has been a statistic since he took his first breath:

"Approximately 10 out of every 1,000 babies born in the United States will have CMV infection; but nine of these will have no symptoms and one may have significant illness involving nervous system damage or developmental disabilities."

Ethan is the one with nervous system damage and developmental disabilities. So far we are only seeing the developmental aspect manifest itself in his motor skills. Cognitively he appears to be doing well, sign language has been a great gauge of what he is capable of learning. He is also at high risk (for life) of developing seizures. He is at risk for serious eye problems, many infants with cmv are actually born blind or lose their eyesight in infancy. He has other nervous system difficulties that would be too lengthy to discuss here.

You can google CMV and read more, it is callled Cytomegalovirus.

Eileen said...

Heather, Great Post! Great writing and you raised so many good points. It is not a simple question for any parent, much less for a parent for who has a child with special needs. I appreciate you honesty and the realness of both sides of the isssue. This is true for all parents, special need or not. A tough question to be asked on the spot, but you handled it well. It is a very personal thing, and you have no need to defend yourself, just be your yourself. That is what I love about you, your honesty and about the ups and downs. You are not alone, please remember that. XOXO

Drew's Mom said...

What an incredible post. Thank you for sharing such a personal thing with me. I think that Ethan is very lucky to have you for a Mom!

I've thought a lot about having another child, now know that Drew's deafness is genetic. I don't know the answer yet - and thankfully we only wanted two children so I am not sure if I ever really have to make that choice. It's interesting to think about...could I do this again? You bring up some great questions.