Thursday, February 20, 2014

How Julia Died

Anxiety…such a pervasive difficulty in our human experience.  I myself have experienced more anxiety in my life than most might admit to.  I know what a panic attack feels like, and I also know transcendent peace.  In fact, I believe I told several people that right before Julia’s surgery that I felt a “peace that surpasses understanding” (Philippians 4:7).  It certainly surpassed my own understanding.

But prior to Julia’s surgery, I could not have claimed that.  In the early months of Julia’s life, I worried…a lot.  There was so much to think about.  Life had been open and free, and now it was constrained by what Julia would need.  It was scary to think about all that we would need to do, about all of our dreams and goals that would be changed and given up.  Probably one of my biggest regrets now is that I spent so much mental time worrying about the future.

It is difficult now to be anxious about anything.  Nothing really seems important enough to worry about, once your daughter has died.  The worst possible thing has happened to you, and much to my surprise, I am still here!  I truly wake up some mornings semi-surprised that I have not died of a broken heart.  Thankfully, those days are fewer now.

During Julia's life, we spent an unbelievable amount of energy worrying about germs.  We had to.  We had hand sanitizer on every level of the house, we gulped Airborne chewables like candy, and we dosed Natalie on immunity-boosting supplements.  We enforced hand-washing rules; our hands were cracked and bleeding from washing them so much.  Julia never went anywhere, other than an occasional outdoor outing when the weather was good.  Natalie too was confined, as toddlers are such little germ magnets.  We attempted to disguise our anxiety when the rare visitor did come to our house, as we were so grateful for the support of friends and family.  When I would return from a solo outing, I would scrub my hands, sometimes multiple times. 

And still, despite all of this effort and anxiety, we caught mild colds that Julia in turn experienced.  She tested positive for rhinovirus (a common cold) at both scheduled surgery dates, but the second time, it was a mild enough version that the doctors felt confident that it would not affect her during surgery.

So when she died, I immediately blamed myself.  I had not kept her well; I had not protected her enough.  I had not left the house, literally, during the two weeks before her surgery, but I still felt that I should have known she was not well enough for the surgery.  How could I have failed my daughter in such an enormous way?  I had been charged with her care, and yet I had not held her back from surgery despite her having a mild cold.

This was how I felt for about 6 weeks after Julia’s death.  The weight of this began to subside slowly, but it was still there.  Encouragements from various friends helped me to know I wasn’t thinking logically, but I was “stuck.”  And, having the upcoming autopsy meeting didn’t help. 

I was afraid that the doctors would tell us, on February 4, that the rhinovirus killed her.  Or that a nurse had made a mistake (which I had preemtively found ways to blame myself for).  As the meeting neared, Taylor and I were a mess.  When we arrived at Nationwide Children’s Hospital that day, we were frozen in the car for about 15 minutes.  We knew we should pray, so we gave that a feeble try: “Dear Lord,” I prayed.  “Please help me not to throw up.  And other things.  Amen.”  (I’m serious!  That’s all I could muster.)

Do you know what we learned at that meeting?  NOTHING. 

What would they have done differently?  NOTHING.

Guess what her autopsy showed?  NOTHING.

Our doctors have no idea why Julia died.  They were nearly as upset as we were about her death, because there is no rational explanation for why she died. 

What’s more – she was negative for rhinovirus.  She did not have a cold at the time of surgery.  (My jaw hit the floor when they told us this.)

Julia has taught us an extremely uncomfortable, difficult truth.  The truth is that even when you do everything you can do, we are not in control.  You can move to another state in order to get the best medical care for your daughter, you can love strongly and deeply, you can advocate for the best care you can get, you can quarantine your family, you can follow all medical instructions perfectly – and you are still not in control. 

I have often been counseled not to worry about things because the worst is so unlikely to happen.   With great sadness, I share that that was not our outcome.  Against all odds, the worst did occur…and yet, in an unlikely paradox, that has freed me from many other anxieties.  My counsel to myself is now, "Don't worry.  Terrible things happen in this life, but nothing can separate us from our loving God."

Safe with her earthly father before her surgery.
 A dear friend wrote to me,
“God has taken what is misjudged by the world to prove His great love. A life that would be thrown away by some, God kept close to Himself, close to heaven because it is so precious to Him.”

And that, dear friends, is why Julia died.

Saturday, February 1, 2014

Important Meetings

One of the many reasons that we moved to Columbus, OH, was because of the very large Down Syndrome association (DSACO: Down Syndrome Association of Central Ohio).  Over 500 families belong to this group, and they have been such a huge source of support for us, both before and after Julia's birth and death. 

One of the many things DSACO did for us was to connect me with other "heart moms” whose children with DS had the same heart defect as Julia.  These women were such a huge source of support for me.  I remember one woman's encouragement about heart surgery was that it was like a second birth.  “Except this time,” she said, “your child will truly come alive.”  I did a lot of emailing with them, but I never met their children, due to our quarantine, until after Julia died.

So, I made it a recent priority to meet these two beautiful girls.  First, Natalie and I played with M last week.  M is 20 months old and is full of zest for life.  She is feisty and active, and I can foresee that she will not be held back by low expectations!  She is absolutely beautiful, with striking blue eyes and long blonde hair.  I hadn’t prepared myself for the emotions I would feel during this meeting, as it was our first play date since Julia died.  As soon as I met her, I sobbed. 

So many people have thoughtfully asked if it’s hard for me to see children who are the same age as Julia, or if they shouldn’t talk about their children.  I’ve told them that I did so much grieving of the loss of “normal” when Julia was born that seeing typical children actually doesn’t get to me all that much.  But meeting M was a deeply beautiful, sorrowful encounter for me.  I grieve the loss of the joy we would have had with Julia as she climbed her mountains. 

Like any smart toddler, M didn’t warm up to me right away.  But eventually, I was able to coax her into my lap.  She had gotten tired and thus allowed me to enjoy cuddling her.  “She likes hands,” her kindhearted mother told me.  The next ten minutes held a beautiful ritual that I won’t forget.  M traced my hands with her fingers, over and over.  She threaded our fingers together; she touched my wrists.  She waved my hands in space, observing closely and quietly what happened as she controlled my movements.  Were it not for Natalie and I needing to get home for naptime, I would have continued that ritual for much longer.    

As I buckled Natalie in to the car, I felt the need to explain to her why M’s mom and I did not intervene more strongly when M pulled Natalie’s hair (Natalie was a champ when this happened; I have had so many moments recently where my heart has just burst with pride at Natalie).  “Did you notice that M’s eyes looked a little different than yours?” I began.  Natalie looked at me, wondering where this was going.  “M has Down Syndrome, and Julia had Down Syndrome, too.  When people have Down Syndrome, it takes them a little longer to learn things.  So M didn’t pull your hair to be mean…she is just still learning how to get along with you.”  Natalie mulled this over.  “Does that make sense?”  I asked.  Natalie responded, “I have blue eyes, and M has blue eyes, and Julia has blue eyes.  And we all have Down Syndrome!”

WOW!  Convicting moment for me.  I had chosen to focus on what Natalie may have noticed as being different about M, both with her eyes and her speed of learning.  What did Natalie do?  She focused on what was the same, on the beauty of our shared human experience.  I am learning so much from my toddler, just as I learned from Julia. 

A few days later, Natalie and I met four-year-old G.  G had a crash in the hospital similar to what Julia experienced, but after four weeks, she was able to go home.  Natalie and I loved playing with G, and it was so much fun to see G taking care of her younger siblings.  I admired her dappled auburn hair and her precious smile.  She was just like any other child: she was so verbal and active.  Unlike some other preschoolers :), she was great at sharing and was so very sweet.  

G taking care of her little sister
On this day, I was ready for any emotions I might experience, and as such, my only tears came when G’s mom related to me some of the hurtful comments people had made about her daughter.  Comments like, “We want to offer you prenatal testing to make sure you don’t have ANOTHER child with Down Syndrome.”  If that had been me, I think I truly may have slapped that medical provider.  We wanted and loved Julia, and all that comprised who she was.   

Sisters playing together

You see, Taylor and I feel like we’ve been let in on a precious secret.  I know the truth now, in a deeper way than I ever did before: that these children, these people, are so much more valuable and beautiful than how the world judges them.  They know something that the rest of us are not in touch with.  I can’t put it in to words, and so I hope to encourage you to get to know children with special needs.  I am not saying they are perfect; I am just saying that these special people enable us to know what is truly important in life.  The medical issues and daily concerns are so taxing, but who these children are defies explanation until you get to know them.