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.

Julia's Life

This is the slideshow of Julia's life from her memorial service.

Daddy's Goodbye

This was Taylor's goodbye to Julia at her memorial service on Saturday.  I am working on filling in more of the details of her miraculous story and will share them as soon as I can.

For our sweet baby Julia Christine Shipman, July 13, 2013 – December 11, 2013.

Dear friends, this is a sacred moment.  Thank you for sharing in our life and in the life of our sweet Julia.

Looking out at all of you here, I am reminded of another sacred moment: the day Christine and I made our vows to each other seven and a half years ago in the presence of many witnesses – and many of you here now were there with us then.

Do you remember that day?  If you were there, you may remember that we stood up front with our parents, who read a prayer for us from the Book of Common Prayer.  One of the things they asked the Lord was this: “Give them wisdom and devotion in the ordering of their common life, that each may be to the other a strength in need, a counselor in perplexity, a comfort in sorrow, and a companion in joy.” 

A strength, a counselor, a comfort, a companion.  Christine, I pray that the Lord would give me the grace to be all of those things to you as we pick up the pieces of our hearts.

And dear friends, we could not have imagined the degree to which we would need each of you to serve these roles in our lives as we have this year.  Part of our gathering here today is to acknowledge God’s faithfulness to us in a time of unbearable pain, and a very important part of that faithfulness is expressed right here in this room.  Simply by your presence here. 

It is important to us, in turn, that you know how grateful we are for the ways in which you have been the means of God’s grace to us in such a time as this.  We have needed you, and will continue to need you.

I’m sure that you understand that it is not easy for me to be up here speaking about Julia when losing her is still so fresh, so raw for us… when every fiber of our being cries “No!  I do not want to be here.  I want to have this week back, and do whatever it takes to keep our precious baby.”  I did not want to speak here this morning; I thought it would be too painful.

And it is painful.  But I concluded yesterday that I would regret it if I did not at least make the attempt to tell you about Julia… to at least try to capture the essence of who she was to us.

As her parents, Christine and I are sad that although many were touched by Julia, that we were the only ones with the privilege of experiencing the fullness of her beautiful spirit day-to-day.  And as Jesus reminds us, a light in a dark room ought not to be kept hidden.  Its light is life-giving, and it must be shared.  And so I would like to share with you about this little light named Julia.

Some of you may not be ready to hear some of the things I will share today.  And that’s OK.  But I must share my extraordinary experience with this little girl.

To understand Julia, we must first be reminded of the nature of God, her Creator.  The Bible is God’s bright message of His salvation to a dark world, and many stories from His Word could suffice.  But in trying to capture the essence of my experience with Julia, I am particularly struck by the story of Elijah seeking refuge and direction from the Lord when his life was in grave danger.  From 1 Kings 19,

“And God said, ‘Go out and stand on the mount before the Lord.’  And behold, the Lord passed by, and a great and strong wind tore the mountains and broke in pieces the rocks before the Lord, but the Lord was not in the wind.  And after the wind an earthquake, but the Lord was not in the earthquake.  And after the earthquake a fire, but the Lord was not in the fire.  And after the fire the sound of a gentle whisper…”

Dear friends, this is as close as I can come to describing Julia’s life.  Julia was a gentle whisper of God—a soul closer to the veil between this life and the next than I have ever known—quiet, humble, and like other babies in many ways, yet from the beginning, somehow in a special way closer to the raw, unfathomable power of the creating God of the universe than you or I.

She was a spiritual being in a sense that is difficult to describe.  We know from God’s Word that each one of us is a spiritual being—that we are conceived as “souls with bodies.”  But it was even more than that with Julia.  I wish I had time to relate all the stories that made this so… like the magical moment when she picked her name at 18 weeks gestation; or the time when a young girl with Down syndrome ran to pregnant Christine to emphatically greet Julia while she was still in the womb; or when we stood in an airport security line in February with an older couple with a grown son with Down syndrome, and both instinctively knew at that moment that Julia would be diagnosed Down syndrome (which she was, in utero, the following week); or even the startling vision I had the evening before her death, of Julia’s risen spirit, grown and beautiful, standing on the staircase, pleased to see me as I arrived home from work.

I cannot express enough that it was just different with Julia—her soul was more present, more accessible, more immediate.  Those that had the privilege of meeting Julia and holding her will know what I mean when I say that her eyes sparkled with eternal joy, that the deepness of her gaze held something wondrous and mysterious that transcended words or heart defects or genetic anomalies.  Julia’s beautiful, wonderful, sparkly gaze touched me to the core of my soul, deep calling to deep, and convinced me more than anything before in this life that God loves me.  I cannot describe to you the gift that this child was to my spiritual journey: a cairn marking the way, a light in the dark, urging me to live a life worthy of that which God, in his mercy, has made me to be.

Julia was the sweetest baby.  We were amazed at her incredible patience.  She rarely cried when she wanted to eat, even when she was overdue and we were slow to get her what she needed.  Any time we scooped her up, her face would light up and she would beam ear to ear as we lifted her out of her bouncer and cuddled her close.  For Julia, her desire to be cuddled superseded any other need.

And yet, from the moment we learned of Julia—and this may sound strange to many of you—we also knew with more conviction than we cared to acknowledge that we would not be able to keep her.  Christine particularly had the sense early on that our time with Julia would be brief—so much so that she felt the need to record this sense in her journal entry for April 21^st of this year, three months before we would get to meet Julia.  I relate this and other brief anecdotes only to point to the nature of Julia’s existence with us.  This world was not her home, and the Lord made that clear to us in many ways.  But he also made it clear in all these incredible circumstances that we were chosen for her and her for us.

As for Julia’s choices, it is not lost on us that the name she chose for herself, Julia Christine, literally means “young follower of Christ.”  And it is also not lost on us that Julia went to be with Him at a time when we pause to remember His coming to the Earth He created as a baby, and wait in eager expectation for the risen Lord Jesus to return and make all things new.  With all of my being, I believe that she was His from the beginning, and this world was truly not her home. 

Come, Lord Jesus. 

Amen.