Hey Jude – Unavoidable Fear

A month ago, three things happened at the same time: a girl I danced with as a kid lost her baby at just over a year. Her baby had been born with a rare form of Down’s Syndrome. Most babies with this condition do not live to birth. If they survive birth, they usually pass away early on. I believe I read about 5% of babies make it to a year. Few, very fear will live into their 20s. They will have multiple struggles and health issues. None the less, my friend had and loved her baby despite what I am sure were multiple fears.

A girl from my home town who is a few years young than I am published a piece in The Huffington Post with the polarizing headline that she wish she’d aborted her first child. The piece was well-composed and heartfelt. The author, a former cheerleader, was raped by someone she thought was a friend in her own home. Like many young girls, she kept the assault a secret. Her grades dropped. She lost weight. Her health suffered. When she did finally see a doctor, she learned that the worst had happened—she was also pregnant. She was halfway through the pregnancy, too far along, she notes, to do anything about it other than see it through. She knew the baby would be born with issues, and she was. The baby was born to the young mother. The baby had multiple health issues and had to be on several heavy drugs. She died of natural causes at just over a year, breaking her mother’s young heart.

The third thing, of course, was the law that was passed in New York, which caused uproar throughout the US. I am, for many reasons, religion being a major one, not supportive of terminating unborn babies. That does not mean that I don’t understand. I hate that we live in a world where pregnancy isn’t always a willful decision or where when pregnancy does happen that it isn’t always the right time or affordable. I know there are unimaginable circumstances, people who are afraid to have babies because of their governments or their resources or what-have-you that are so far beyond my little cultural bubble that I can’t even process that they exist.

One thing I have observed, and that I did observe in considering an unforgettable story I read about a woman who had an abortion somewhere in the third trimester, that these stories all have one theme in common: fear. The woman who had a late-term knew her baby wouldn’t live far past birth if he lived at all; if he did, he wouldn’t be able to breathe or eat on his own. She and her husband had wanted the baby, but the cost, financially and emotionally, were too great of burdens to bear. This was not a decision they made lightly.

They went to Colorado for the procedure. Things went wrong. Very wrong. There was no presentable body to bury. The mother suffered substantially after the procedure with bleeding and illnes

Of course, that is not the point. The point is that she and her husband were afraid…afraid of the disabled child. Afraid that their child would die out of their control. Afraid that their child would suffer a pain worse than their own if they did live. Afraid to watch that baby suffer. For many people, it is a greater sacrifice to not have a baby who will suffer than to have one that will.

Certainly, one of the few things that I am thankful for is that Jude never suffered, that he left this world peacefully and naturally. I will always wonder what would’ve happened if we’d have been with a more experienced team (the doctor on call was very new and misread the ultrasound, conveying to us that Jude was dangerously underdeveloped, which was inaccurate), if he’d have lived if he’d have been delivered, or if he would’ve had developmental issues.

I don’t write about this aspect of Jude’s loss often, but in the hours before he died when I was in the hospital on the monitor, believing he was in the lower 5th percentile and having read that meant he would likely be born with severe mental or physical problems—at best he would have Down’s, I was scared. Remaining calm was almost impossible, and yet I couldn’t stop reading. I kept looking for some kind of indication that my baby would be normal. Was there a chance that he’d be okay even if he was that underdeveloped?

Even now, I still feel the anxiety of that fear. The fear was very, very real. I had no control over what was happening. I cannot remember everything I prayed for. I prayed he’d be okay, of course. I prayed he’d be “healthy”. I envision that parents who believe that their child will be unwell or will suffer are gripped by a similar fear. Fear compels us to take action.

Generally speaking, most people are compassionate, and I believe that some people choose to avoid what they have been told by doctors will happen by avoiding it. This does not mean that they avoid pain, though. There is no way to avoid pain. There is no way to avoid grief, nor is there a way to avoid hardship. Choice does not grant that.

I’ve been teaching writing for over a decade. Roughly half of my students are victims of sexual abuse by family members, rape, drug exposure, or a combination of those things. Of those, several have had pregnancies that were unwanted. Different students handled them differently. One story that stands out is of a girl who, after having a difficult life, became pregnant as a teen. Her family threatened to abandon her if she didn’t end the pregnancy. She did and was never right again.

The reality is that when we are confronted by fear, we believe that we have no choice. I find it interesting that advocates for a woman’s right to choose cite choice. I cannot think of anyone who has made that choice because they felt they had a world of options. They felt like they had no choice. And the reality is that we don’t always have choices or control. And it’s not fair, and the pain is real, and it hurts. But it can’t be avoided. Not at all.

The only area where we have any power is in our ability to love. Losing Jude hurt. Last December on his fourth birthday, I visited his gravesite alone, knelt down, and cried. “I’m sorry, I’m sorry, I’m sorry, I’m so sorry,” I wept over and over, even as I had no idea what I was sorry for. I still don’t know. I’m sorry he died. I’m sorry I didn’t got to a different hospital. I’m sorry I’ll never know if it could have been avoided. I’m sorry for…all of it. And more. I’m sorry for being so happy when he’s not here. There is no rational reasoning in any of it. The pain is still there, but amidst the pain and swirling around it is love, so much love.

Jude humbled me. He opened my heart more widely than I ever could’ve imagined. He helped my marriage. He made me brave. He is a source of pure love for me, even though there is pain and sorrow. Unavoidable pain and sorrow. Even if Jude had been born with disabilities, I would have loved him. I imagine the pain and sorrow when he did pass would’ve been greater. I cannot imagine what his little life would’ve done for our family in that capacity, just as I cannot imagine what my friend’s baby did to and for her family.

I do know that when their baby passed, they were sad but also full of love. Swirling around their pain was a year of moments and memories that no doubt bonded their family closer and helped them grow in their faith, in the understanding that we don’t have control and we don’t have to. The pressure to have control, to always do the “best” or “most right” thing is crippling and is exhausting. I for one am thankful to realize that. It enables me to have peace, even in the face of difficulties, such as Sean’s cancer diagnosis.

I couldn’t control losing Jude. I couldn’t control the pain of losing him. As much as it hurt and as traumatic as the experience was, I’m thankful to have seen him, all 4 lbs and 2 oz, to have seen his face, to have photos, to have been able to bury him, and to celebrate his short, magnificent life. I feel fortunate that fear didn’t rob me of those small-yet-precious gifts.

So, as I reflect on the three things that happened last month and on the stories of others, I feel a great sense of sympathy for people. Fear and pain are unavoidable. Life will carry on somehow regardless. Your heart will pump and bleed no matter what. The tears will flow, hot and fast. You won’t be able to breathe for grief and fear. But that’s what happens. You don’t get to choose how you feel. You cannot choose it, and you cannot hide from it. Choice that might somehow make an agonizing decision or situation better is an illusion. Don’t be disillusioned by it. Instead, look for the love and fall into it.

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Hey Jude — Making the Most of This Life

Dear Jude,

Hey you. I’m sorry it’s been so long since I’ve written. Sometimes, I try too hard to think of what to say or of saying it the right way when what I should do is just talk to you, the way I talk to your sisters. In fact, I should probably think before I speak with them…some of the time, anyway.

In four months, you’ll be four-years-old. I’ve been looking at our friend’s children who are turning four and thinking, “Oh wow, he’d be such a little person right now.” Specifically, I watched little Catherine at her birthday party at Chuck-E-Cheese as she wandered around seemingly lost but also quite self-assured in the way that only preschoolers can be. She was wearing a Bat Girl costume just ‘cause. What would you like? Dinosaurs? Trucks? Space? Bugs? Balls? Cars? Costumes? I told Sean that I bet you’d love to watch the Earth program on Netflix that he likes to turn on and watch with the girls in the evenings.

What would you like to eat? I’d like to think you’d be somewhere between Lillianne and Eilie…a little finicky but not so much that your entire diet is comprised of goldfish crackers and organic milk (like Eilie’s does).

I imagine you playing with the gusto of a little boy. You were by far the busiest baby. Your movements had no rhyme or reason—you just wanted to be on the go.

As I visualize the happier aspects of what your life would be like, I neglect to imagine the challenges, like getting you to listen. Would you be a good listener? I kind of feel like you’d be Lillianne made over and maybe a little wilder…less imagination, but more action-packed. I really would give anything to be able to fuss at you when you’re naughty or when you wake the baby or fight with your sisters over toys. I’d give anything to be able to feel like I was suffering from simultaneous rage strokes and heart-attacks because I’m so overwhelmed.

I’m sure every parent who lost a baby before she ever met them feels this way just like I’m sure every parent who lost a baby after meeting them—and perhaps fussing at them or feeling frustrated because of lack of time or sleep or whatever felt ashamed and possibly tortured with guilt.

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The emotions that come from losing a baby or a child at any age are so nuanced they defy logic. The perspective, too, shifts paradigms.

To begin, you realize how unimportant everything else is compared to those little lives. Money. Work. Legacy. House. Status…whatever, is completely irrelevant. You’d give it all away and never ask to have it back just to have that person back. The irony is that no one is standing around wheeling and dealing and willing to make that offer.

Then, you learn to live with what happened, with the pain of the loss or the grief. I won’t speak for everyone, but I know that in our / my case, the faith that I didn’t even realize I had enabled me to grow in ways that I never imagined. While I wouldn’t wish our loss on anyone, I also wouldn’t begrudge anyone experiencing the absolute love and comfort and peace that we were given after losing Jude…in the weeks, months, and years.

To begin, Jude helped me realize one of the hardest lessons of all, which is that we are not in control. I still struggle with that one, to be honest, but I also know that the things that make me hit the emergency brake on my brain—like when I imagine a freak-accident, our child running across someone’s driveway as they’re backing out, a car wreck, choking on a grape—are things I can’t control just as are the medical maladies that paralyze me with fear.

Last week, a little girl who suddenly developed a deadly brain tumor lost her life.  I look at my vibrant and healthy little girls and take it for granted. I take for granted that none of my children were born with some other kind of cancer or allergy or genetic disorder that at any moment could cause them to cross beyond the veil; however, I have friends who have babies with these problems, and I’m perpetually awed by their faith and resilience. I know that it’s ironic given what happened with Jude, but I can’t imagine.

But then I realize that the fear isn’t what God want us to feel. These challenges, these terrifying, awful, challenges have purpose if we allow them to, and they can transform us in ways that we never realized.

To begin, one of the most remarkable things I learned when I realized how little control I had was that…that’s actually quite okay. Someone else is in control, and I can only do my very best.

Another thing is that one of the most beautiful aspects of tragedy is when you’re able to use what happened to you to help others. This, too, is a Biblical precept as Paul advised in his letters for people to take their struggles and to help those who struggle similarly. Sometimes, I allow myself to revisit Jude’s funeral in my mind, and the people who stand out the most are the ones who came because they’d also lost children or suffered a traumatic loss.

Finally, I understand why suffering is important. In nearly four years, I’ve grown so much emotionally and mentally. I’m more understanding, loving, and compassionate. I’m not perfect, but I want to do better all of the time for my family and my babies. In our Sunday School class a few weeks ago, we talked about why suffering is necessary or why God allows bad things to happen.

I think about things like that a lot because for people who find people like me, people who have faith, to be tedious is that we often can’t explain why suffering is allowed…natural disasters, pedophiles, hatred, evil, etc. I won’t go back to Genesis to explain that, but I will say I started to think of a story idea one day (a total non-starter) about a world where there was no pain, no suffering, no bad, etc. While I realize that Christians believe that is the very definition of heaven, I also cannot imagine being as grateful or as compassionate as I am now if not for suffering. I tried to picture what the conflict would be in this story, and there wouldn’t be. How would the characters grow? Without conflict, how would they evolve into a better version of themselves? So, I believe suffering is allowed in part because it allows us to behave in a way that shows our courage, our love, our compassion, our patience, and our forgiveness for our fellow man…all virtues that God shows to us on a regular basis.

As I look ahead, I know my future will include more suffering, more trials, more challenges to the aspects of my person that I am sometimes too afraid to relinquish. I don’t fear the unknown nor the unexpected. I don’t allow myself to worry about what may or may not happen. I don’t worry about what suffering life will bring. I believe in taking each day as it comes and in doing my best every day and in being kind to myself because sometimes, I think we forget to be kind to ourselves, especially when we are dealing with something that aggrieves us, when we think perhaps we could have done better or had we acted differently, things would have been different.

So, my Jude, thank you for all of that. I love to imagine what kind of little boy you’d be if you were here, but I know that’s only ever going to be fiction. The reality is that the little boy you are now is more than I ever could have conceived or hoped for.

One day, I’ll see you again. For now, you’re in my life, and you’re in my heart. You sweet, beautiful boy. Mommy misses you.

PS: I love that today was one of “your” days because I feel like you were there with our family and your dad this morning. Big hugs.

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