Friday, December 21, 2007

Discovering the Genetic Pattern in my Family


In March of 2006, we had a team of researchers spend the day with us at my house. One of my cousins came up from Missouri and my parents came in from Michigan. All of my siblings and some nieces and nephews were there as well. The researchers spent the day talking with each of us individually and gathering blood samples. Before they left, we sat down to a huge dinner. My mom never lets anyone leave on an empty stomach.

A few months ago, we received a letter identifying the gene with a bunch of numbers and letters. The gene at this point is rare--just two other families have been identified with this gene so far.

I posted more about this gene here: The Genetic Puzzle.

The implications of genetic research are not to be taken lightly. We knew, going into this research project, that we likely would discover information that would impact future generations in our family.

My daughter has the gene and there's nearly a hundred percent guarantee that she will pass this gene on to her children. My sons will not.

My husband and I knew that we would likely have deaf and hard of hearing kids when we got married. That didn't factor into our decision whether or not to have kids simply because there was a deaf gene present. We wanted kids and if they happened to be deaf, hard of hearing or hearing-- it didn't matter. Sure, we talked about how it might be easier to have kids with hearing in the normal range. And we grieved a bit when each of our kids lost their hearing, mostly because we knew that society was going to give them a rough time here and there.

In the end, it comes down to attitude. I happen to think that this world is much more interesting because my deaf and hard of hearing kids are in it. I like hanging around people who feel the same way. I avoid toxic people who think that my family, my kids are less human because our genes are a little skewed.

And I look forward to embracing my deaf, hard of hearing and hearing grandchildren someday.


14 comments:

deafk said...

Wow, you are lucky enough to discover those information in advantage! :)

In my family, there are skipping genetic pattern, it is like hit and miss. I am curious for my kids, tho.

Isn't it interesting that you could be able to predict a bit on your grandchildren!!?

deafk

Karen Mayes said...

It seems like my children share the same genes your family has, from my husband's family (my kids are 5th generation of deaf family)... born hearing and then losing hearing as they get older. It hits my son harder since he LOVES music (he is involved in the choir singing in his mainstream school.) My daughter seems less emotionally affected though... I guess it is becasue she attends the deaf school where she is exposed to ASL on a daily basis.

But with what is happening in Great Britain, it sure makes us think... Some says deafness is a gift... but people see deafness and other disabilities caused by genes as expensive medical curses.

Oh well...

Karen said...

Karen,

My daughter took it much harder than my sons-- she was four at the time and it was an adjustment for her. The boys were two and it has just been a part of their life.

kw said...

Ya know-- long ago before they had genetic testing and it was just a guess what caused my hearing loss a couple doctors suggested to me not to have children, despite the fact no one in my family **ever** had hearing loss before. It sort of pissed me off. Life is a crap shoot. Seven out of ten "disabled" people become that way AFTER birth due to sickness or accidents during the course of life. All things considered, deafness isn't the biggest challenge to face either. When one doctor told me I shouldn't have kids, I looked him in the eye and said, "Really why not? I don't think my life has been that bad?" He was speechless and didn't say anything more about it. I'm glad I went ahead and had three. I finally had the connexin 26 testing done a couple years ago and they determined it's not in my genes once in for all!! Not that I would have minded having a deaf child or grandchild.

Karen said...

Deafk--

It is definitely interesting to have the information and a name of the gene. But it also caused some hard news for my nieces and nephews as each found out whether or not they had it.

Karen said...

KW--that's an important point about disabilities and how they can appear or happen after birth.

Kelly Malloy said...

We went through genetic testing when we found out my 2nd son has fragile x syndrome. It really had little impact on us having other children. The disabilities don't make us love him any less - in some ways we love him more.

Kirk M said...

Completely off topic here...

Merry Christmas and Happy Holidays to you and yours, Karen! Hope yours is a safe and wonderful.

Jennifer said...

Karen: Merry Christmas!! I hope you and your family have a wonderful holiday together! :)

RuffleButts said...

Thank you for your inspiration. There are many factors in life that we may choose differently, that is why we don't have any input in the choice. There are also many decisions that I may not have made had I known the challenges I would have to face. People are not defined by their ability to hear, or see, or walk. People are defined by the individual that they choose to become, by the lives that they touch and the decisions that they make. You and your family are an inspiration to us all.

Amber
RuffleButts.com

Kimmylyn said...

My nephew (who is two) was diagnosed as deaf at age one. When I was pregnant with my second child they said my family could have the gene, but it would be expensive to test.

I chose not too, because a baby is baby to love regardless.

Hetha said...

Happy Holidays to you and yours Karen! I hope this finds you relaxing at home and enjoying family time.

As for this post, it's also my opinion that people with differences (of any kind) make the world a more interesting place.

Tamara said...

What a great picture. I really appreciate your blog and enjoy reading. You are a great mom.

Got My Kids Mississauga said...

Very Interesting Blog! Keep up the good work!