I've been putting off posting an update about last week's Genetic testing at Children's. I haven't had that much time to really process it. I've been avoiding thinking about it. It wasn't a pleasant experience (although what part of this whole journey has been?), and it was definitely the hardest thing for me to deal with since the actual diagnosis. I mean, OF COURSE I want to hopefully find the root of Christian's loss since it is such a mystery to our family. OF COURSE I want to try to identify any other syndromes present (hopefully we can rule them all out). OF COURSE I want Christian to know about his loss for his future family. But, do I really want to know if I passed a gene onto my child that would make his life A LOT different and harder than mine? Do I really want to find out that my other children will be or most likely be or have a 25% chance of being deaf? I don't think I can deal with that yet.
I know it's completely normal to have all these guilty feelings. "They" say it's part of the grieving process. "They" say not to worry about these feelings, that it's completely natural. "They" even say that these feelings may never go away. "They" also say that sometimes there is a reason for everything and this is all part of God's plan. I'm not sure I believe everything "They" say....I can't imagine feeling this way forever.
Some folks have asked us about this test and our plans for more Children. Chuck and I want more children. Period. Regardless of these results, I hope that we will be as lucky as we were with having Christian. A friend of mine who is expecting her first baby asked me how hard it was parenting a deaf child, and how it must be such a stretch....in all honesty, I can't imagine it any other way. And other than having a slightly collicky baby in the beginning, Christian is an easy baby. He has the most loving, silly, and sweet personality. So, the possibility of us having more deaf children isn't a concern.
It all goes back to the "Did I CAUSE THIS?" question. I know I'm going to need more time to deal with these feelings. The bottom line is that no parent wants their kid's life to be difficult. Every parent wants their kid to have better than what they had. Our philosophy is that hearing or not hearing, we will do whatever it takes for Christian to have anything and everything that we ever had and more.
6 comments:
Christina,
Understand what you're going through. We did the genetics testing and did not find an answer, but even though we did the genetics testing, it didn't matter to me because I approached all of this with the idea, "It's my fault without a doubt that my child is deaf because of something I did in my life or else it was my mom's fault because she wished it on me by always saying 'I hope you have a child just like you who doesn't listen!'" By starting with this thought, I then hit the next level where I asked myself, suppose I caused his deafness...did I do it intentionally? Did I want my child to have a more difficult life than what each child must already face? The answer to THAT question was NO, and that was enough for me to find peace. Then, there's destiny. As you've blogged, you've had numerous experiences with the deaf community, just enough to prepare you mentally to begin approaching Christian's deafness. I had an unforgettable experience when I was sixteen and working at a fastfood place where I saw a hot deaf guy wearing hearing aids and was so emotionally affected that I cried for a half an hour straight. Have faith, it will help you and concentrate on the fact that you are a strong woman with a beautiful child. You will get through this...Jodi
I was trying to get around to all my blogs yesterday to wish everyone a Merry Christmas but I ran out of time. I hope yours was a wonderful one, all the same...you were in my thoughts! :) I hope you took lots of pictures of that adorable little man...was Santa good to him?
Christina...everything okay? know the holidays are rough, if you need anything just write...jodi
Genetic testing can indeed open a can of worms but attitude makes all the difference. I felt much the same way as you do-- that having more kids was what I wanted and whether or not they happened to be deaf, hard of hearing or hearing didn't matter. I posted about that here:
http://community.disaboom.com/community/deafmom/archive/2007/12/18/the-genetic-puzzle.aspx
and here:
http://putzworld.blogspot.com/2007/12/discovering-genetic-pattern-in-my.html
Hey Tina,
Sorry for the delay in posting - it's been crazy around here, as you know... Obviously, I'm not facing the same internal debate that you and your psyche are currently waging, so I don't want you to think for one second that I think I am able to place myself 100% totally in your shoes. That being said, I think I can put myself a little bit into Christian's, being that I'm in my wheelchair and everything. The one thing that I hope you can lean on, at least from my perspective, is the fact that, while Christian's life may indeed be more challenging at times or different than yours has been, it doesn't mean that you haven't done it better. It's weird, but for me, I've come to a place in my life, after 18 years of living with a spinal cord injury, where I can say that I am sometimes grateful for having gone through this experience. Do I wish (quite often) that this didn't happen to me? Yes. Would I never wish this on someone else? Absolutely. Do I sometimes get frustrated that things are trickier for me than others? No doubt. But I have to say, unequivocally, that I am lucky to have had an opportunity so early in my life to gain some perspective on what matters - what it means to be a true friend, sister, daughter; how to have empathy for others, especially those who are different than you; how to look for the positive in the most challenging of situations. I wouldn't have had this change in perspective without my caring, loving, supportive family and friends. I know that the possibility of your "causing" Christian'sdeafness is a scary prospect. But try to look at it this way - in the way you raise him, the way you help him to learn to navigate the world with this, and the way you model optimism for him, you are giving him a gift that is far more valuable than anything else he could receive. Talk to you soon...
We did some genetic testing for my son Luca, now 7 months, back in November for hearing loss. Conexion 26 to be exact. It took forever to get the test back. For some reason, although I wanted to know the test results, I had a much harder time with the idea that my son was hard of hearing. I wanted to wish it away. The test came back negative and for now, we'll never know if it was genetic or not, but it doesn't really matter to me. Sure, if I think about it too much, I get down, but I'm too busy trying to keep up with by 2 year old and 7 month old to dwell too much on why. We all have health issues and this hearing loss is Luca's.
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