Tuesday, September 29, 2009

So, I Finally Took Them to a Geneticist. And I Hated It.

Ever since the Beast was just tiny, Dr. Peters has suggested taking him to a geneticist. He had one he highly recommended, but I fought the idea tooth and nail. Somewhere inside of me, I just knew his hearing loss was "my fault". I mean, I know I didn't choose it for him, but we all know it came from my side of the genepool. My biological dad and his brother are both Deaf. We know that much. Beyond that, we just don't know much about him. Anyway, suffice it to say that I'd really put my foot down about it, and was not going to budge.

I actually stuck to my guns for years. When Snort started having vision troubles and falling behind developmentally, Dr. Peters suggested it again. Again, I gave a very firm and deeply emotional "NO!". I didn't want someone in a white coat with lots of letters behind her name pointing her finger at me and telling me this was my fault. I know. I know the questionable genes come from me. Why rub it in, right?

Then along came Little Guy. We knew right away that he was Deaf. Again, the suggestion came to do the geneticist thing. Again, I said no. It wasn't until Little Guy was out of the hospital with a strange diagnosis of a very rare lung disease that I finally (albeit reluctantly) listened to Dr. Peters. Today, I sucked it up and took the three youngest boys to see her.

I have to be honest. I hated it. I hated everything about it. From the intrusive, though I'm sure necessary, questions to the pointing out that my sons are all very small in stature compared to to the King and me to the comment about how fascinating it is that my children have such a vast array of disabilities, everything about the appointment just felt icky. I hated it. Really, I just wanted out. I wanted the walls to stop closing in on me and the questions to stop coming and the measurements to stop being made. I wanted her to be more patient with my highly inquisitive Beast and my overtired Snort. I wanted her to be more understanding of the fact that I hadn't been informed that I needed more adults with me and that I'd know that if I'd read her website. (Ummmm, that's interesting. No one ever told me about a website. Not pointing fingers, of course. I'm just sayin'...)

I'm sure there were good parts. She did seem very interested in my children's history, but I figure that, like all the other specialists, she's really just interested in learning more about my kids so she can present the case to a room full of white coats who see my children only as case studies, and not so much for the amazing individuals that they are. She was also very thorough. She checked them from head to toe, noted birth marks, and even inspected their butt cracks. (Anyone know why she'd check there? I'd love to know if someone would like to enlighten me.)

She let me know how nice it would be if they all had the same genetic "thing" going on, but all professed it in different ways. That said, she really didn't seem to think that was going to be the case. Still, she started by drawing the blood from just one of the boys. Since Little Guy was the only one who couldn't argue, he was the one who got poked. Luckily, he didn't even seem to notice. That's my brave little guy right there!! After those tests come back, I suppose she'll have more to go on and may look closer at the individual situations of each boy later.

I was totally up front with her. I told her I have no interest in knowing what she finds out. I mean, I guess my interest is peaqued just a little, but certainly not enough to want to know. Let's face it. DNA is really just an outline of what might come later. It tells us what disorders we may be predisposed to, or what causes certain parts of us (like Deafness or rare pulmonary disorders), but it doesn't really determine who we are. We determine that.

I remember when the Beast was just weeks old and a Deaf Ed. teacher came in and told us that it was likely he'd never talk and reading might get up to as high as a fourth grade level by the time he graduated high school. We lost so much precious time with him at that point because we were so wrapped up in what might be. We were so busy mourning the loss of our dreams for him that we failed to see all the reasons to rejoice in him. It was like an expectant mother who takes pre-natal blood tests and is told she might be carrying a Down's Syndrome baby. She worries, panics, frets, and fails to enjoy the time she has while that baby develops inside her. By the time the baby (who is usually perfectly healthy despite the testing) is born, the mother has spent so much energy worrying that she has to work that much harder to bond with the beautiful life she is holding.

I won't let that happen again in our family. I won't let some lab test tell me what might come to pass. I don't want to spend my children's lives always worrying that they might be predisposed to one thing or another. I want to enjoy them. I want today to be a special day where I just breathe in the moment and enjoy the children I have.

Up until now, we've always taken it one day at a time. We've had some surprises here and there. But we've dealt with them. I didn't have to worry and wonder when Little Guy would show us his breathing problems. It happened in its own time. And we handled it. I don't tend to worry about having babies with hearing loss. When they're born and are given the hearing test is when I decide whether to worry.

So many things could happen in life. We could be blown away by a huge gust of wind, be bitten by an incredibly rare, venomous and unknown breed of duck (I know. Slim odds.), step out into the street and be hit by a car, or be struck by lightening while on our daily jog. Many things could happen. Just imagine what the world would be like if we all sat around worrying and trying to prepare for what might happen. Look how much of life we'd miss. I'm not suggesting that we shouldn't be prepared for some things. I am simply saying that sometimes it's just better not to know.

So, that's what I told her. I don't want to know. "Share the information with my children's doctors so they know what to look for if you want. I just don't want to know. I want to love my children for who they are today, and not dread what the DNA says they might become tomorrow." I think she understood my point. She didn't bat a lash, but simply took note of it. I guess I did like that part of the appointment. She did say she's bound to tell me if she finds something life-threatening. Sure. I'll be waiting by the phone.

Anyway, there it is. I took them to the geneticist. And I hated it. I suppose that, if it can help other doctors prepare to help my children, then it was the right thing to do. If not, it was just a really lame way to waste a whole lot of time and money. Either way, it's done. And, for me, that says a lot. I took a big step today. And I hated it.


  1. I'm right with you on the "hating the genetics" appointment. Our geneticist made me feel like a horrible mother for suspecting something was wrong with Nolan (he had some "frontal bossing" which turned out to be "midface hypoplasia"- whatever). He ran tests for the most common (nonsyndromic) deafness genes, and then proceeded to berate me for questioning the apparent bump on our son's head- how did I know the term "frontal bossing," for example? Our ENT and pediatrician had used the term, that's how. He told me he'd break out some horrific pictures of frontal bossing to show us the difference- no thanks. I left that office in tears. I will never, never, NEVER go back. Even with the other things we have found out recently. Because it was a truly horrible experience, I want nothing to do with geneticists again!

  2. Love your outlook on not wanting to know. You're right, who has time to sit around and worry. I've known many mothers who were told their babies would be born with downs only to be born healthy. We've stayed away from them too, for the same reasons.

  3. Ah, I just love you. I love everything about you. That's all.

  4. I am in tears reading this. So true, so true... I have to let this sink in. I will TRY to live by what you wrote. You are amazing, I don´t know you and still I know you are amazing! You write amazing things! Thank you!