Monday, June 15, 2009

Not Me! A Study

One thing about starting a weekly tradition--blogging or otherwise--it definitely shines an obnoxious spotlight on how quickly time is passing and how much you are (or are not) accomplishing in said time frame. This week is no exception. Not Me! Monday is here again.

I had a strange Not Me! out of body experience today when the nicest phone survey person EVER called from the Utah Department of Health. We recently received a packet inviting us to participate in the National Birth Defects Prevention Study. It arrived in a bright blue folder made of flimsy stock featuring a blue-toned daisy on the cover centered right under the word "defect." The contrast of the particular variety of flora usually reserved for discussions on feminine freshness under that ugly word made for a strange combination. I cringed. Me? Participate in a defect study? Ughh. It was not a reality for which I was willing to accept eligibility. Not me!

Why do we use such an ugly word to describe a perfect little boy who came with some unique plumbing? Is it really a defect? Sure, his anatomy doesn't look or work like yours and mine, but it is evidence of the body's strong will to find a way when there is none. Whatever messed up information my DNA passed on to his little and rapidly dividing cells so many months ago made for more than a slight variation on normal--generic--mundane. However, his body's will to survive was so strong it compensated in many, many, complicated ways to make up for what his heart could not do. I think it's all pretty ingenious really. His body that is. So as I continue on with this story I prefer to think they were calling to study the ingenuity of my son's anatomy. Yes. That's much better.

I answered the world's nicest phone survey woman with my consent to participate in the study. I soon learned that it has been ongoing for 11 years now and is focused on narrowing in on the potential causes of birth defects (read: anatomical ingenuity). I answered, "Yes" "No" Never" Always" "Once a Week" "Twice a Month" and on and on and on for almost an hour.


Aside from the expected litany of inquiries about whether or not I or the baby's father (I find it amusing that throughout the entire hour they dared not ask if I were married, divorced or single--seriously you just sent me a packet telling me I am in a computer somewhere labeled as having a defect and you might offend me with something so personal as my marital status?) had engaged in any sort of recreational drug use, drinking, or applied pesticides as a vocation, they asked some suspicious questions about cereal and drinking water and food groups I had never considered.

For example:

Q: For the three months prior to and throughout your pregnancy did you consume cereal? What kinds? How frequently did you consume each kind?

A: I rarely stopped eating cereal. It's all that sounded good. Cocoa Pebbles. Cheerios. Shredded Wheat. Life. Mini Wheats. Five times a week. Twice a week. Three times a week. Twice a week.

Q: For the three months prior and throughout your pregnancy did you consume milk on a regular basis? Skim milk? Whole milk?

A: Yes. Skim. As if in an IV--please reference the above answered question.

Q: For the three months prior to and during your pregnancy how many glasses of drinking water did you consume on a daily basis? Filtered water at home? Water away from home? Bottled water?

A: Because I do not keep track in any written way of all my beverage consumption, I guessed. But it's a lot of all of the above. Who doesn't?

I didn't really get weirded out by all the information I was sharing until she started using McKay's name. I never shared it with her, but she knew it. I didn't like hearing it on a stranger's lips; and especially not in this context.

Has anyone out there participated in something like this? When McKay is president is my participation going to come back to haunt him? Of course, we were assured of complete confidentiality--right up to the point when she let me know the next phase of the study would be completed when my cheek cell sample collection kits arrived in the mail. Hmmm.

I'm torn. Do I want the research to march on and find the cause and cure for all of the craziness I see in the bodies of the tiniest among us each time we visit Primary's? Yes. Am I 100 percent confident all of this information will be used for good and true purposes? Mostly. Am I concerned anything I share about my cereal loving ways could come back to haunt us as far as insurance goes in the decades to come? Very.

So this Not Me! is about how I would never be selected to chat about what I could have done to precipitate this challenge for my baby. No, not me. Not after every doctor I've seen up to this point told me this was just one of those things--nothing could have been done to cause or prevent it. I couldn't have been made to feel that drinking too much water or eating fresh fruit on an above average basis could result in consequences on par with drug use and inhaling pesticides on a daily basis. No, not me.

The truth is life is fragile. Life is miraculous. Life is not a gift we give our children, but a gift we accept from God. And no study, no matter its success in figuring out if all of the things we are putting into and around our bodies are now conspiring to backfire will ever get close to uncovering His greater plan.

I firmly believe we need to get to the bottom of anything that makes our children less than whole, or well, or delirious with the joy of being alive. That's why I answered those questions. That's why I'll probably insert that sterile little stick into the chubby little cheek of my prince when it arrives in the mail next week. But I'll do it right after I swab mine. And Matt swabs his. Because ultimately he is us and we are him and we are all in this together. And the truth is when it comes to getting to the bottom of the lessons offered in the big things life puts us through, I'd do better to quit saying Not me! and start trying to understand Why not me? I think we all would.


Rich, Shelly, and London said...

Amen Sista! You are so great with your words! I hate that word "defect", too! Our babies aren't defected! They're perfect!

Jamie Bailey said...

I also cringe when the "defect" word is used - especially since it is used to describe how our Kevin looks, which I think it perfect.

We did a study just like that after Kevin was born. I remember feeling the same way you do about it.

Whitney said...

Daisies are a DRAB little flower. And - McKay is marvelous work and a wonder. Period.
You are a rock star for taking the survey. With patience.

Aimee Hardy said...

I just completed the same survey last week (and yes, she really was the nicest surveryor ever) and am about to stick my cheek swabs in the mail. I just wish I could get a copy of the results. They were some very strange questions.

Katie said...

I too hate that word...there are a few that can easily send me into that "mode" after hearing them. I was picking eyedrops up at the pharmacy a couple of weeks ago for a nice little case of pink eye that the kids were passing to each other and the pharmacist asked me if the child taking this medication had any chronic illness...I hadn't really thought of it in that light before and my stomach just sank.

Anyway, yes, I'm one that can easily get "rubbed the wrong way" with words!!! But when I hold my sweet little defected heart babe, I feel so much gratitude and immense joy:)

We truly are the lucky ones to have these blessings in our lives!

Rikki said...

I think you're absolutely right that we should look closely in what names we decide to give to individuals. Without really even trying, we can overlook the person behind the disability, defect, or condition.
The best connection I can make with this is from what I know about education. In the world of special education, there has been a big push for "person-first language." For example, if I am using person-first language, I might refer to someone as "having autism" rather than being " an autistic kid." This shifts the focus to the individual and away from their disability. I think your point on "defects" really speaks to this movement. So, when we're talking about a person born with health problems, why not describe the unique way their body works rather than give them a label which holds a negative connotation?
I believe it is very important to recognize one's humanity above all else. I think that kind of respect sets up a framework for building self efficacy in children and teaching them that they are first and foremost a person who has dignity and value. There are no defects, just differences. Being able to celebrate our differences without having to stick a label on each person who doesn't fit in our box is the best way we can help one another.
Put simply, I agree with you! Yay Mckay!

Anonymous said...

Thank you for your blog... I am Avery Ann's grandma; Leah Hallows' mom.. in the last 3 months I have racked my brains for the answers to all my questions. Until all those ""birth defects"" come close to home a person doesn't think about them.. its close to home now and I want to know, I want to help, I want answers that will probably never come. Answering those questions must have been hard and confusing .. but you really did help in a small way. That is how it works.. Good for you. I am proud of you even though I do not know you.

Barbara Pokrin
Leah Hallows Mom

The Smith's said...

Hi Mindi-

I have followed McKay's story for a little while now and wanted to introduce myself as well as tell you how much I appreciate your blog and love your writing!

Our son, Luke, was born with a single (left) ventricle and has had two of his three open-heart surgeries. He is coming up on 2 1/2 and is a happy, energetic, willfull boy with an ingenious anomaly!

Thanks for your willingness to participate in this study, even though it brought up some unwelcome thoughts & emotions. My dear friend had a baby girl early this morning and the text I got read, "She's here! Perfect & healthy." I KNOW there was no intention of linking those words together, but it was tough for me.

McKay is about the sweetest thing ever and I hope you guys are enjoying your summer!

Take care!


Sabrina said...

I participated in this exact study-only classic to my ADD character, I couldn't find the cheek swab-not until this past weekend when I was organzing for our big move (yes, we are moving!).

I found it fascinating...mine was for the Boston U Slone school-and we can share notes sometime.

Ryan and Hilary said...

How funny, I just did the same survey. The question I thought to be utterly hilarious was "Are you and the childs father blood related?" um excuse me....No.