The Vulnerability of Parenting and the Secret to Happiness

00I remember clearly, crossing the street on my lunch break at work, not long after I had learned I was pregnant for the first time.  The thought popped in my head, “Be careful!  It’s not just you anymore!”  It happens early.  Parents have a natural desire to protect.  We have the desire to ensure our children’s health and safety, and that is a good and important thing.  But that desire to protect can easily translate into a false sense of control. “If I do what the doctor says, if I listen to conventional wisdom, if I give my child the best of everything, he or she will turn out strong, smart and successful.”  The truth however is far from our imagined director’s chair.  G.K. Chesterton famously once wrote, “An adventure is an inconvenience rightly considered.”  As parents, we would do well to consider our vulnerability as the opportunity for adventure and more, the opportunity for lasting joy.

I learned this lesson the hard way.  I was well on my way to growing my “perfect” family when I delivered my fifth child.  Immediately it was clear that there was something wrong.  After a terrible labor and few barely audible cries, my son, John Paul was whisked away to the neonatal intensive care unit.  Three days later he was transferred to Children’s Hospital where he was put on a ventilator and extensive testing ensued.   Weeks later, he was diagnosed with Spinal Muscular Atrophy, a progressive, genetic, neuromuscular disorder.  At the time he was born, there were no treatments available.  It was basically a death sentence.   My husband and I learned not only that gradually every muscle in his already weak body would waste away, but also that every time we had a child, we had a 1 in 4 chance of the child being born with the same condition.

We brought John Paul home after three months in the hospital, accompanied by an entourage of machines that were supposed to do all of the things his failing body couldn’t: a ventilator, a cough assist machine, a suction machine and G-tube.  We were blessed to have him in the mix of our crazy family life for almost a year at home.  During that time, I learned a lot.  I learned that being together is more important than having the freedom to run around frenetically to kids sporting events and parties. I learned my marriage was stronger when we worked together on the project of our family. I learned my kids loved being a part of their brother’s life in any way they could.  They would read to him, dance for him, start his G-tube feeds and do his physical therapy stretches.   Despite the myriad of challenges, we were extremely happy.  Then, after MRIs showed traumatic brain deterioration and an almost certain diagnosis of nerve cancer, we found ourselves discerning the exercise of control that no parent wants to have.  After a lot of prayer and consulting with trusted priests, I held my 15 month old son in my arms and we removed life support.

After John Paul’s death, I was afraid to have more children.  I didn’t know if I could handle the heartbreak of losing another child, let alone deal with the logistics and stress involved with the 24 hour care.  Every time I was tempted to surrender to that fear though, a little but hard to ignore voice spoke in my heart: “Didn’t I take care of you?” and “Weren’t you happy?”  The truth would not be silenced.  I have had the great privilege and joy of experiencing the providential love of The Father.  How could I fail to acknowledge that?

In addition to recognizing the depth of love and joy that my experience of having John Paul had brought to me and my family, I also realized that there is something worse than the stress of caring for a special needs child, worse even than the grief I still feel at the loss of my son.  It is a terribly demoralizing feeling to live your life making decisions based on fear.  It actually highlights a fundamental truth that deep down we are all loath to admit.  Suffering is an inevitable part of the human condition.  We either suffer because we have dared to love, or we suffer because we are afraid to love.  The great lie the devil sells though, is that pain is incompatible with joy.  Mother Theresa said, “Pain and suffering have come into your life, but remember pain, sorrow, suffering are but the kiss of Jesus - a sign that you have come so close to Him that He can kiss you.”  

At this writing it has been a little over 8 years since John Paul’s death.  I have since had eight more pregnancies.  Five of those children are with John Paul now and three are my typical willful, rambunctious toddlers.  Some might ask, is it worth the risk?  Is it worth the pain?  I would argue that any time we open ourselves up to loving another person, even if we suffer, we benefit.  When we love, we grow in our ability to love again.  We forget our needs and think about someone else.  John Paul definitely taught me that.  This is the recipe the world desperately needs for happiness.

As parents, regardless of our genetic likelihood of having a child with special needs, we are vulnerable.  Our children, our spouse, and we are mortal beings who will disappoint.  It is our job as parents to protect, yes, but also to surrender to our vulnerability.  It is only if we accept our frailty for what it is, an opportunity to love, that we can experience real joy.