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.

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. 

Reunited on Earth

This morning, Taylor and I did something that we had been dreading: we went to the funeral home to pick up Julia's ashes.

We had steeled ourselves somewhat for this encounter.  Never having done this, and never having expected to do this, we went in together.  Hill Funeral Home in Westerville has been gentle and generous with us, and we felt appropriately welcomed as we entered the building.  After we introduced ourselves (as my dad had handled everything for us previously), Mr. Hill brought out a very small, round parcel.  

The size shocked me.  I don't know why.  Mr Hill handed my baby's remains to me, and it was then that I began to cry.  Where I once cradled her in my arms, I now held her dust in my palm.

We spent only a few minutes in the funeral home and returned to the car to honestly work through our grief.  We talked about getting a more appropriate urn for Julia until her remains are buried in Taylor's family plot in New Hampshire.  Taylor, who is a skilled woodworking craftsman, had an idea upon seeing various wooden urns in the funeral home.  "I'd like to make an urn for Julia, out of burl."  Burl, he explained, is an anomaly that forms as a tree grows.  It looks strange and unusual on the outside, but on the inside, the grain of burl is wondrously intricate.  Passersby may think nothing of seeing a burl growth on a tree, but it is prized among craftsmen and reserved for the most beautiful elements of a piece.  This seems to be a perfect metaphor for our special girl.  It will take Taylor awhile to craft this piece, but I can assure you that he will create something worthy of Julia.

Tree burl

Tabletop made utilizing burl

We decided to get some donuts on the way home.  We had so many doctor's appointments both before and after Julia's birth, and as often as we could, we would get ourselves a treat after our appointments to make the receipt of often bad news more bearable.  Today, we decided that Julia should be part of one last outing in her honor.

  

Giving Julia Life

Taylor and I learned about Julia's heart condition at 18 weeks gestation, and her diagnosis of Down Syndrome was confirmed at 22 weeks gestation.  In North Carolina, abortion is legal until 24 weeks, and so we were asked if we wanted to terminate the pregnancy.  It was a question that we never had to discuss; Taylor and I both immediately said that was not an option.

Some readers of this blog may wonder why we chose to give Julia life.  In fact, several of the Down Syndrome mamas who have befriended me have been asked bluntly by acquaintances why they did not abort their beautiful children.

Depending on the source, the abortion rate of children with Down Syndrome is 80-90%.  Down Syndrome is the most common genetic disorder, and one in every 691 babies born in the United States has Down Syndrome.  (Imagine how many people with DS would be alive if they were not aborted!)  Down Syndrome has been studied extensively because it is so common.  Despite this, no environmental factors nor maternal activities during pregnancy have been definitively linked to causing Down Syndrome (Source: NDSS website).

There are several different variations of Down Syndrome.  The type of Down Syndrome that Julia had (which 95% of children with DS have) technically occurs BEFORE the child is conceived, before the embryo has formed.  This type is a non-heritable, "random" mutation.  When I learned this, I felt, for the first time of many, that Julia was divinely given to us.  There was something so mysterious and beautiful about the way that she acquired her extra chromosome, and it freed me from feeling guilty for having somehow caused her heart problems.

My faith most certainly has shaped my feelings about abortion; I believe that God sovereignly forms each child.  And yet, I can't say that I hold feelings of judgment toward women who do have abortions.  I can't imagine the heart-wrenching process that would lead to that decision, and we each have to live with our decisions.  Abortion was never, ever an option for me because I knew I would never forgive myself for cutting our child's life short, especially without having met her.

But, you ask, wouldn't you want to avoid all of the suffering that you are now enduring?  Surely, terminating the pregnancy would have been a better option than walking through this deep cavern of grief.

First, let me be terrifyingly vulnerable: I understand why one might ask this question.  Before being blessed with Julia, I often wondered about this.  What is the point, I thought, of having people with profound disabilities suffer through such hard lives?  And it takes such a toll on their caregivers - why is this a worthy end?  Frankly, I worried about this during the beginning of Julia's life.  As she suffered through the first two months of her life, I hurt for her, seeing how difficult it was for her to thrive.  I worried about her - and our - future.  But as she grew stronger, I stopped seeing Down Syndrome and saw only Julia.  She was my beautiful, determined, peaceful daughter, who had more patience as an infant than I have ever possessed.

My dad has talked about how we, as a family, have learned that the relevant word in the phrase "special needs" is "special."  Julia was special in a deeply unique way, and though she required more help than "typical" children, she also taught us more in a short time than we ever expected.  We often remarked that Julia was a much easier baby than Natalie was, and her beautiful spirit filled our home.  We loved her deeply, and our deep grief honors her.  As C.S. Lewis wrote,

"To love at all is to be vulnerable. Love anything, and your heart will certainly be wrung and possibly broken. If you want to make sure of keeping it intact, you must give your heart to no one, not even to an animal. Wrap it carefully round with hobbies and little luxuries; avoid all entanglements; lock it up safe in the casket or coffin of your selfishness. But in that casket—safe, dark, motionless, airless—it will change. It will not be broken; it will become unbreakable, impenetrable, irredeemable. The alternative to tragedy, or at least to the risk of tragedy, is damnation. The only place outside of heaven where you can be perfectly safe from all the dangers and perturbations of love is hell." (From "The Four Loves.")

Julia's life also impacted her sister for the better.  I was afraid of how Julia's needs might negatively affect Natalie.  However, there are scientific studies which show that siblings of children with special needs rate their lives more positively than children without those same special siblings.  Natalie misses Julia.  She asks where Julia is, and when we are going to get her back.  She tells me that she is taking her dolls to heaven "to see Jesus," and she tells us that she is sad.  Even though it is a painful lesson, Natalie knows, at two years of age, that heaven is the more pertinent reality than the shadow that is life on earth.

So, back to the question - don't I wish I had avoided all of this suffering?  No, not for a moment.  I don't get it, and I don't like that this has been our path - I've used the phrase "cosmic joke" several times - but I wouldn't trade my time with Julia for any easier path.  Suffering and difficulty strengthen us in unfathomable ways, and my perspective on what's truly important has been irrevocably changed.  So many of you have shared the miraculous ways in which Julia's life has impacted you…I could never wish any of that away.  

I can hear our beautiful wind chime, given in memory of Julia, ringing in the breeze.  Her sweet little spirit lives on.

Presence

A few weeks before Julia's death.

It has been over two weeks since Julia died.  That seems impossible.  Her little light was such a bright beacon of hope, and our world is dim without her.  We are so honored to have been her parents, and we are increasingly convinced of the purpose that her life has in Christ's kingdom, as so many have shared their sense of this.  We also want you to know: Please, do not be afraid of people with Down Syndrome.  If the Lord blesses us with more children, we would not fear a special needs diagnosis.  We would feel richly blessed to have another child just like Julia.

So many of you have asked what you can do for us, and how you can help.  I think I speak for many grieving mothers when I say that simply your presence is a help.  When you talk about my beautiful child, that is a help.  When you write a quick note on Facebook, that is a help.  An encouraging email is a help.  I have been asked with some trepidation by close friends if I've had any people say well-meaning but unkind things to us, and I have to say - no.  Everyone, literally each person, has been unbelievably kind and thoughtful in their words to us, and we thank you for that.  Simply acknowledging that there are no words in the face of unbearable pain: that legitimizes our struggle and helps us to feel understood.  The only time that we've felt hurt is when people don't acknowledge our pain and ignore the grief that we feel.

Come spend time with us.  Sit us with us in silence.  Invite yourself over.  Invite us out.  Even if we cannot accept your invitation, the fact that you want to see us, despite us being so very weary and in grief, means everything to us.

Reflection

I read this article on the Her.meneutics blog the day before Julia was born.  (Julia's birthday was July 13, and this article was posted on the 12th.)  It ponders why God allows and if he causes children to have birth defects.  I have no desire to get in to a theology debate with those who may want to do so, but this article very closely mirrors Taylor and my thoughts about why Julia was born with complications.

http://www.christianitytoday.com/women/2013/july/are-birth-defects-really-part-of-gods-plan.html?paging=off

Grief

Our home smells of lilies.  We are enveloped by beauty honoring our daughter.  We have felt so surrounded by love from family and friends.  Things are quieting down, and we are feeling okay with that. 

Grief is an incomprehensible state to those who have not experienced it in its fullness.  Every cell of my body aches.  Any tiny movement I make is painful.  Every sound I hear is hard to process.  Each exclamation point I see is like a small needle, relentlessly pricking me with reminders of happiness that are not my own.  Movements are slow.  I tuck myself in fetal position, instinctively knowing that this is the only way to heal.  I whimper and sob, primally following in the footsteps of mothers before me who have lost children.  I ask questions that make sense only on an emotional level, asking often, silently and aloud, “Where is she?  Where is my baby?”  I allow myself to hurt deeply, to have others provide for my every need, to not take care of my physical needs in order to tend to the needs of grief. 

I have removed very few of Julia’s things so far.  Her burp cloths still sit in the family room, and her diapers are in their usual place.  The breast pump continues to sit by my bedside as I slowly wean the hated machine.  Julia’s bottle rack was moved only to make room for the beautiful flower arrangements that now occupy that place, and her medicines thrown away to make space for food that others generously provided.  We have not fully unpacked our hospital bags, and her car seat sits waiting for her in our room.  Looking at the clothes that I wore on the night that she died brings visceral pain. 

And yet, the needs of our two-year-old are very real and bring us joy as well as reminders of the importance of continuing on.  Many have asked us how she is.  Precious Natalie accompanied my mother and sister to the hospital in the middle of the night as they journeyed to say good-bye to Julia.  She played in a playroom as we rotated supervising her while others kissed Julia a final good night.   Shakily, Taylor and I told her that the doctors couldn’t fix Julia’s booboo (we had told her previously that Julia had a booboo on her heart), and that we were very sad because that meant that Julia wasn’t going to live with us any more.  But, we said, we were also so happy because Julia is now living with Jesus.  Natalie processed this, and then wanted to play with the next toy.  She is a deeply sensitive toddler and doesn’t miss a thing, so I’m sure we will revisit this conversation in the future, especially as our routine returns to normal and Julia is not part of it.  But for now, Natalie has been so distracted by all of her visitors that we have only mentioned Julia a few times.   One morning she awoke and wanted to know where Julia was.  Another day she said she wanted to turn on Julia’s music box. 

Natalie has been saying something that she never said before. – “I’m afraid.  I afraid I gonna get hurt.”  And I think this means she is afraid she will get a booboo that will make her not live with mommy and daddy any more.  So we have been constantly reassuring her that she does not have to be afraid, and that she will always be with mommy and daddy. 

From Natalie, too, come our least expected holy moments.  A few days ago she was examining a flower arrangement, and I handed her a rosebud that had broken off.  She placed it back in the arrangement and identified it as the “baby.”  She proceeded to point out the mommy, the daddy, and then asked, “Where’s Natalie?”  We found a Natalie flower and joined it closely with mommy, daddy, and baby.

There was also the moment today when she began singing the chorus to Mumford and Sons’ song, “I Will Wait for You.”  It brought all of us to tears.  And then there was the beautiful moment at Julia’s service in which Natalie, who had been running around the foyer, arrived at the icon of Jesus’s death and said, “I running to the cross!”  We all are, dear girl.