NFP And Genetic DisorderCatholic . Seven Quick Takes . SMA Posts
Next week is Natural Family Planning (NFP) Awareness Week. I do not normally write about NFP because I would prefer to keep that aspect of my marriage private, as would my husband. However, based on the emails I’ve been getting, I feel there is a need for an NFP post to be written for parents of children with a genetic condition (like Spinal Muscular Atrophy, Muscular Dystrophy, Cystic Fibrosis or Mitochondrial Disease). Our situation is unique and often overlooked in the NFP conversation: much of the time we choose to keep our struggle to ourselves, feeling alone as we try to make sense of God’s plan for our lives. This post is for those families. I know it’s an NFP post, but please, keep your comments civil. I will not hesitate to delete any I deem inappropriate.
When I get emails from readers it is quite often because their child has been diagnosed with a serious medical condition. Many of these parents, like Tony and I, learn the hard way that they’ve passed on a devastating genetic condition. One of the first questions posed in these heartbreaking emails is some version of, “What do we do about future children?” Couples who’d hoped to use their remaining years of fertility to have and raise large families now must contend with the knowledge that they risk passing on a serious medical condition to future children. Tony and I have a 25 percent chance of having a child with SMA with each pregnancy. We managed to have three children without SMA before having two with the condition. I know families whose first two or three children all had SMA, and a neurologist we knew told us of a family with ten children, and the tenth was the only one to have SMA. Every pregnancy is a crap shoot.
The readers who reach out to me usually are as familiar with NFP (and all it’s ways of being practiced) as Tony and I were before Fulton was born. We sort of practiced it, but we were open to having a large family (despite my own health issues) so I never worried about getting too good at it.
However, when you are faced with a child who will require your care for their entire life, require multiple costly surgeries and medical interventions, and who may die quite young, the future of your family planning takes a different turn. And becoming an overnight expert at NFP while learning all the ins and outs of your child’s diagnosis is difficult and not always successful (Hello Teddy!).
And so these women write to me, overwhelmed and often spiritually strained. Trying to delay pregnancy seems like one more cross, but bringing another potentially disabled child into the mix right now seems impossible. Unfortunately, if you turn to the internet for help or advice you’ll run across a ton of “knowledgeable Catholics” who are all too eager to tell you what to do, and the state of your soul (or marriage) if you do otherwise, when they themselves have absolutely no idea what it’s like to be in this situation. You simply can’t practice NFP “right enough” for any of them. Your mindset is either too contraceptive, reflects too little faith, is too reckless, is bad for your marriage and your spouse, or disregards the needs of your other children.
I’m writing this post today because I want parents of children with a genetic disease to know that the NFP debate online is too simplified, often offensive and usually doesn’t apply to them. If you’ve emailed me, this post may sound familiar. If you haven’t emailed me but wanted to, this is what I would tell you.
First, I know that right now you’re overwhelmed. You’re quite possibly angry with God or feeling hopeless and despairing. You are grieving the death of the life you imagined for your family and your child. You are spending all your time at doctor’s appointments, subjecting your child to a battery of tests and possibly hospital stays. If you have other children, you feel guilty about the time you’re away from them. Time alone with your husband will be at a premium and you may be hard pressed to spend it together joyfully without dwelling on your child’s condition. The future seems dark, unknown and uncertain, and frankly, you might not be able to think about it without becoming upset.
Going forward, you know any future children you conceive could have the same genetic condition. That might mean a shorter lifetime that requires full-time caregiving or, a child that dies shortly after birth.
You’ve probably been presented with two options:
Just contracept! You’ve got so much on your plate! God would surely make an exception for your family. Or get your tubes tied! You wouldn’t want to bring another suffering, disabled child into the world anyway.
Just trust God! He won’t give you more than you can handle! And besides if you learn [prefered method of NFP] you can have lots of sex with no babies! It’s 99.999999% accurate! And if you get pregnant, it’s because you were doing something wrong but that’s okay because every baby is a blessing! And I’m sure your next baby won’t have the same condition! But don’t try abstaining for too long because that’s bad for your marriage; it’s like the worst thing ever for you and especially your husband so don’t ever do that!!!
I don’t give either option in my responses, instead I write of prudence.
Prudence is the virtue that disposes practical reason to discern our true good in every circumstance and to choose the right means of achieving it… It is prudence that immediately guides the judgement of conscience. The prudent man determines and directs his conduct in accordance with this judgement. With this virtue we apply moral principles to particular cases without error and overcome doubts about the good to achieve and the evil to avoid. -CCC 1806
In a nutshell:
Prudence is the first of the cardinal virtues because it is the ability to look at a concrete situation and know what ought to be done. It is the ability to make right judgments. Prudence gives us the knowledge of what must be done, when it must be done, and how it must be done. – Source
If a couple decides to postpone a pregnancy due to grave circumstances, they are allowed by the Church to use NFP. If they do not know how to practice NFP, they will probably need to abstain for long stretches of time until they either discern they are ready for another child or are sufficiently comfortable in practicing NFP. All these steps require the exercise of prudence, and surprisingly, not the input of anyone else outside the marriage, except perhaps a trusted priest.
It is not prudent to use contraception because it will put the married couple in a state of mortal sin. In such a state, it will be hard to properly exercise prudence in other aspects of your life. If prudence in family planning requires long periods of abstinence, your marriage will survive it, even if it seems like an unfair cross tacked on top of an already difficult situation. If both spouses are in agreement, you will get the graces you need to persevere and be strengthened in this situation. And if you fail by choosing to use contraception for a time, get to confession and try again. You can always choose to do the right thing even if fear previously pushed you to do something you knew was wrong, but seemed easier than the alternative.
People may argue that if you abstain or avoid pregnancy for too long, it’s selfishness, not prudence. However, it is not prudent to engage in sex whenever you want because giving into lust is easier then carefully weighing the implications of another pregnancy on your family. If you’re telling me you need to keep having babies because you and your husband can’t keep your hands off each other, genetic conditions and health problems be damned, you’re not practicing prudence.
Failure to deliberate is called rashness or thoughtlessness. This is when someone just rushes headlong into everything, without ever taking a moment to think it over. It is very dangerous to “act without thinking,” to not consider carefully enough before action. It may work in a Star Wars universe (don’t think; just trust your feelings, Luke!), but in the real world it’s deadly. If you don’t reflect on your decisions beforehand, you will make really stupid decisions. Look at the options, seek advice, pray to God for His guidance, reflect, and take a reasonable amount of time before you act. -Source
People who think long periods of abstinence are an unreasonable burden on a husband reveal that they believe men cannot be expected to choose the good of their families over their own lust. You’re also presuming that abstinence is a greater cross than parenting, or burying, a child with a genetic condition. Perhaps if they would experience sitting in a hospital next to their sick child, or losing sleep night after night due to emergencies and medical interventions, they would understand how easy it is some months to abstain from the marital act rather than risk another pregnancy.
However, there is hope. You will get better at practicing NFP as every month you exercise prudence in whether or not you can be open to life. Eventually, you may feel ready to welcome another baby, even with the increased risk. The fear you have now will go away, you’ll settle into a new normal and after awhile realize that another child, even with a serious medical condition, would be a blessing to your family, and the world. Over time God will work in your heart if you let Him. Your trust in God and your own abilities as a caretaker and mother will grow. You’ll come to believe again that God can bring good from all situations, and that His plan, even when you don’t understand it, will make you and your family stronger in ways you can’t imagine now. Don’t be pressured by other families in similar situations who seem to rush out and get pregnant again. It’s not a contest and you’re no more a sinner, and they’re no more saints, because of their decision. Don’t question your own faithfulness, just work as hard as you’re able. Pray, ask others to pray for you, receive the Sacraments, go to Adoration, and consult with a priest. Our Catholic faith is robust enough to help us through the toughest times. Even when you’re angry and don’t believe that, push through the feeling of abandonment, do what the Church prescribes and in time you will reach a place where you can act, not from fear, but from a place of peace, trust and hope.
Thanks for sticking it out to the end. Drop a civil comment below or link up your post. Don’t forget to include a link back to this post so your readers can find the rest of the Quick Takes (of which this was not one). I look forward to reading your posts!
UPDATE: You can hear me speak about this post on The Jennifer Fulwiler Show podcast, available HERE.
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