Monday, September 23, 2013

Ponderings of the Week

It has been over a week and a lot has happened, but I can't get the conversations about the ethics of prenatal testing out of my head. Perhaps it's because I disagree with people I respect, or perhaps it's because in the future I hope safe and accurate testing can lead to effective therapies in-utero. It could be the realization that someday we may have another baby and I may be in a place that I would want to be prepared. Then again, I may not. The truth is I don't know how I will feel in the future, but I do know that no adverse diagnosis would lead me to allow the premature taking of my child's life, and that is why I do not object to these tests being developed.

I've rolled over the arguments I have in my head. Would anyone advocate for the removal of early pregnancy testing because most abortions are in the first trimester? Of course not! Sometimes we have habits or take medications that would harm a baby in that critical time. Would we say that Dr. Lejeune was wrong for discovering and making public that Ds is caused by Trisomy 21? Of course not! We who have a specific diagnosis for our children and know those who do not are well aware how important concrete evidence is when pursuing treatment. Countless families see countless doctors trying to get someone to name whatever it is curtailing their child's development. I thank God I have a little piece of paper with Mae's chromosomes all lined up for me to see and to show her doctors. Still, that discovery of Dr. Lejeune's led him to a lifelong battle against those who would exterminate our precious children for their chromosomal count.

I realize that the development of some of these tests are probably meant as an aide for women who would rather end the pregnancy early than later. I wouldn't cry if those people sat bare bottomed on a red ant pile. However, I also realize that my experience with Mae's diagnosis was in the minority. Many parents are scared, overwhelmed, sad and grief-stricken that they did not get a healthy baby. They may have done better to get time to process and not dream of the mythical child they didn't get if they knew in advance. This comes back to giving those parents the facts about having a child with an adverse diagnosis and giving them counseling that will help them not to make a decision out of fear of the unknown.

Which leads me to my second rumination of the week; the destructive force of fear. I'm not talking caution, like not letting your two year old play unsupervised in the cul-de-sac. I'm talking the fear that convinces us that we had better not walk a path that will surely be hard and result in epic failure. I really think some of these people who deem prenatal testing as a moral evil are doing this out of fear because of the drastic number of people who do choose to terminate. These lovely people have been waging this war with the doctors who give the news with condolences and directions to make their "appointment" when they are ready. They are the front-liners who see the world through the lens of the war they fight. Who could blame them? Not I! And yet, as I read one woman's assumption that everyone who asked if she knew before birth was implying she should have known and she should have aborted, I reflected that I never thought like that. Don't get me wrong, people have asked me if I would have had Mae if I had known, so I know that attitude exists. However, when I encounter that question it seems to be more of a question of preparedness. "Did you know before she was born?" almost always was followed with a sympathetic noise or face when I answer I did not. I imagine those people were sad I had to find out on a day that was supposed to be full of joy.*

When I hear about early and accurate testing it fills me with hope. I hope that those who test positive find that with time they have the confidence that they are as ready to be a parent of a special needs child as they were ready to be a parent the first time it happened. That it's okay not to have everything figured out, they are in for an adventure. I hope that brilliant scientists discover ways to heal hearts and organs and give the right cocktail of supplements to the mother so the baby can have a healthy life. Hey, wait, look at that! Information, my friends, can and should be used for good.

What about those who choose to abort a special needs child? It comes down to fear, doesn't it? Well, here is what I would say if I were speaking to a couple thinking of making this choice:

    This is your baby. The reality is, you're not ready for this baby. That's okay. Did you know everything you needed to know about dating when you started out? Did you know everything about marriage to this particular person when you got married? Did you know everything about car and home ownership and every job you've ever held before you had it? No. You did not. And you can research as much as you want, but you will not know everything there is to know about your child until you give yourself the opportunity to be his parents. And you will love him. And you will be scared. You will cry sometimes, but also, you will laugh really hard the way you used to in middle school when you couldn't catch your breath and you wondered if anyone had ever laughed to death.
    At first you will listen to everyone, but one day you catch yourself telling off a therapist or doctor or whatever professional in front of you because that person dared to box in your child. It will set your blood boiling when you hear the term "splinter skill" (because it's a talent, no more or less), and you will refuse to wait until that child is delayed to teach him something new. You'll expect him to have manners and to clean up his messes and you'll send him to his room. And you will become more yourself and you will be surprised how delightful that can be. You will fall in love with your spouse over and over and over. Or  you will terminate and this will be an adventure you never had. Because of fear. Do not be afraid. Be hopeful. You won't regret it.

*Look, yes, it's joyful to have a baby, and no one needs to be treating a baby who arrives with a disability as anything less than joyful, but let's not kid ourselves, a lot of parents feel real sadness when they discover their baby is born with any kind of a condition. They aren't bad parents and people who feel sympathetic aren't jerks. Jerks are people who ask if you would've "kept" the baby if you had known.

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