Thursday, January 16, 2014

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.


Sunday, January 5, 2014

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.