One Year Later

(I wrote this on Dec. 11, even though I am publishing it on the 12th.)

It is very hard to believe that an entire year has passed since Julia went to be with Jesus, that two years have passed since I learned I was pregnant with her. 

We of course have been thinking about this day for months, and now it is here.  I find that yesterday, the 10^th, was actually harder than today.  Yesterday involved reliving the surgery and her death, which, even though it technically happened on the 11^th, was at 1 or 2am, so it felt very much like the 10th was the day that she died.

I had prayed often that today would be a sunny day.  We have had a lot of short, extremely gray days, with very little sunshine.  This has so closely mirrored my mood, and I begged the Lord for a beautiful day today, to remind us that Julia is fully satisfied in heaven, and to help with our own sadness.  I must admit I was surprised when the Lord answered that request with a cloudless blue sky this morning.  Thank you, thank you, thank you, Lord.

We had a providentially scheduled counseling session today, which has been so beneficial for us as we have worked through all of the difficulties associated with losing a child.  Our counselor cried with us, sad that we lost Julia, but joyful that through the trials, Taylor and I did not lose each other: we have grown closer together, even through periods of weighty relational and situational stress.

Through October and most of November, my overwhelming emotion about Julia was thankfulness for her life.  I am just so grateful and in awe of how much she taught us about Jesus and faith.  We have grown deeper and become more compassionate people because of her.  Her life and death in the Christmas season reminds me of another Baby who came to the world to save us and teach us to do the will of God.

You see, many people in our lives have made comparisons between our story and the Christmas story.  For instance, I laughingly referred to Julia’s conception as the “immaculate conception," for various reasons that don’t need to be shared here!  :)  We, like Mary and Joseph, were in desperate circumstances when Julia was conceived, and we, like that couple, traveled to Ohio – my home “town”/state – in order for Julia to be born. 

Today, it occurred to me how like Joseph Taylor probably is.  Matthew 1:19 (ESV) says, “Joseph, being a just man and unwilling to put her to shame, resolved to divorce her quietly.”  That is, until an angel appeared to him in a dream telling him not to do so.  I imagine Joseph quietly taking care of things and possibly hiding the reason for the divorce from family and friends.  He was a good man who wanted to take of Mary.  That temperament reminds me of Taylor.

Joseph trusted the angel in his dream, though, and married Mary.  He probably gave up a lot – his reputation, his cultural status, and probably endured a lot of mocking about his pregnant fiancé.  Maybe he was even ostracized in his synagogue. He likely gave up so much more than we even know about in order to obey God and take care of his pregnant wife-to-be.

Taylor has done that this year, and last year.  He has given up so much professionally and personally in order to best serve his wife and child.  He has done so humbly and, in some cases, without a lot of explanation.  But, as I told our counselor today, in so doing, he saved my life.  He rescued me from a deep pit of despair and showed me deeply and clearly what the sacrificial love of Christ truly means. 

I am blessed not only to have had Julia, but to have Natalie, our spunky toddler, baby boy on the way, and Taylor, my beloved husband.

Good News

We are 25 weeks pregnant with a healthy baby boy, due January 6!

People cheer, laugh delightedly, praise God.  They say that it’s wonderful we’re having a boy, instead of a girl, after…well, you know.  Thoughtful, routine questions ensue, about if we feel nervous about having a boy (answer: it takes a lot to make me feel nervous these days), about his name (it’s a secret that even we don’t know the answer to yet), about how Natalie feels (more on that later). 

Whenever I share with people this truly wonderful news, I feel quite a bit of trepidation. Something, or rather someone, is usually left out of the conversation, despite the fact that she never leaves my mind.  Rightfully or not, I often feel like people think this new baby is a solution to our grief.  This is why I’ve shied away from sharing a pregnancy announcement on social media: I’m not quite sure how to fully capture how I feel. 

A sticker that will always be on our refrigerator

At church a few weeks ago, we listened to a young pastor’s wife tell of her family’s journey with Huntingon’s disease.  She had lost three family members to the disease, including her mother, and she was about to lose her sister.  She told her own fear of the disease, and the resulting trepidation she had about having children or even marrying.  She then related that when she became brave enough to face genetic testing, she learned that she was not a carrier for the gene and will never have the disease.

The auditorium erupted into cheers and applause.  It actually made me viscerally angry.  Did they not just hear the rest of what she’d said?  Did they not see her tears?   Her sister is still about to die.  Her journey has been long and hard.  She does not know who else she might lose or when.  I looked at Taylor mournfully, with tears running down my face, while he nodded and said, “They just don’t understand.”

I do understand that there are definite limits to how people can interact in a setting like an auditorium.  I found myself wishing that we as the body of Christ had other ways to express feelings.  I thought of the applause of people with hearing loss, where they rotate their hands in the air: that seemed more respectful.  I thought of the word “Shalom,” and wished that churchgoers could instead express “Peace be with you,” instead of clapping.

People want a happy ending, so we clap when we hear what sounds like resolution.  But the only true and real happy ending is eternity with Jesus.  Some of us who have lived more privileged lives (myself included) have trouble with this idea.  It seems so fatalistic.  We [white Christians in the United States] have come to see God’s provision in our lives as normal.  But ask a Christian in Iraq, or a refugee in Africa, or a person who is African-American in Ferguson where their hope lies.  Things don’t seem to be getting too much better on earth.  When some of God’s blessings - of health or job or love or babies - are absent, we question Him.  In actuality, it was our expectations that were skewed: we forgot that God has given us everything we have, and each provision – of which we have so many – is a gift.

One of my favorite pictures of Julia in her first days of life

Julia, and Bryer and Mercy and Archer and Ethan and Hope and Cam and Ellis, are all BETTER off than any of us are.  But we miss them so very deeply, and that keeps our focus where it should be: on heaven and on Jesus, and not on the cares of this world.  Does it keep me perfectly heavenly-minded?  No.  But Julia is my constant reminder to turn my eyes to Him, even as I continue to figure out how to be in this world when all I really want is see her again.

So how does one respond to someone who is grieving?  (Grief, as far as I can tell, has no definite end.)  Natalie’s recent innocent responses to our pregnancy have been instructive.  It wasn’t until after baby boy’s anatomically perfect 18-week ultrasound that we felt we could talk with her about her new brother.  We knew that Natalie would have questions, so we wanted to wait until we could offer at least some hope.  Nevertheless, we live with the question of if we might lose him unexpectedly; it has happened to us before. 

Natalie, who is three years old, is now very aware that she is having a baby brother.  Though she seems to have in many ways forgotten about Julia (a fact for which I am grateful, as I did not want her to experience anxiety about loss at such a young age), she knows intellectually about her, because she sees her picture and hears us talk about Julia.  There have now been four instances where, when her “new baby brother” is brought up, Natalie has said, “I love babies!  I’m excited to have a baby brother!  And then we are going to get Julia back!” 

A few weeks before Julia died

The first time that she said this, I went into the bathroom and cried.  I’m not sure where she came up with this idea, but it is illustrative of how much toddlers’ minds work, even when they can't put it into words.  My guess is she deduced that, just as she can’t see baby brother, she also can’t see her sister, whom she knows is in heaven; so they must be in the same place and will both be part of our lives eventually.  We have talked each time about how Julia is in heaven and we won’t get to see her until we go to heaven (which triggered many painfully wonderful questions about how we get to heaven and where is heaven and when we will go there and will it be via airplane), and about how baby brother won’t replace Julia but will be a gift to us nonetheless.    

Natalie is so joyful about the idea that baby brother’s arrival accompanies getting Julia back.  She isn’t afraid to remember Julia in the same breath that she rejoices in the news that she is getting a brother.  She is innocently unaware that talking about Julia could be painful; she does not realize that the pain is something Taylor and I rejoice in because we know that Julia’s life is not forgotten.  And when Natalie doesn’t understand us, she isn’t afraid to ask (A LOT) of questions about where Julia is, and Jesus, and heaven.  Each of these sentiments from Natalie would be and are equally encouraging from friends and loved ones.

We are so grateful for the kindness and joy that people display when we inform them of our pregnancy.  However, though it rarely seems to come in the same conversation, we also can’t help but remember how very recently we were pregnant with our second precious child.  Be joyful with us, but know that as much as our pregnancy seems like a resolution to the desolation of grief, to us this good gift of a baby boy is simply part of our story, which God continues to write. 

Mother's Day

Painted by Patrick Dominguez, our pastor in Raleigh

 The love left behind is worth all else. What a gift to love and not be afraid of the consequences.

 – my great-aunt Eileen

This Mother’s Day is a strange one.  I read beautiful messages on Facebook, conveying heartfelt sentiments directed to women who are not mothers and want to be, and to mothers who have lost children.  I forget to put myself into that category, and then it hits me: this sentiment is for me.  The person writing this may have thought specifically of me when typing these words.

I have been to hell:

            I know the torment of waiting for a daughter whose life will not be typical, and wondering what she will be like.

            I know the isolation of caring for her.

            I know the constant anxiety of monitoring each milliliter of milk that she has taken, wondering, “Is it enough?”

            I know hope deferred, waiting for a lifesaving surgery.

            I know deep separation, handing over my precious baby to medical personnel, watching her cry as she observed my tears.

            I know the agony of hearing hospital machines scream that something is wrong, and no one can fix it.

            I know the utter “from dust to dust,” as I leave a hospital room splattered with my daughter’s blood, and leaving her behind.

            I know an abyss of grief, wondering, “Why?”

I have been to heaven:
            I knew the prayers of thousands that covered us during the time that we waited.

            I knew the meals and gifts that came to us as we were so isolated.

            I knew the doctors’ gentle encouragement that we were giving Julia exactly what she needed.

            I knew an extra month of time with my little girl.

            I knew that she was in the best of hands at Nationwide Children’s Hospital, that the hands that took her from me loved our little girl.

            I knew a deep, abiding sense of God’s presence with us as those machines screamed and mocked us, and I felt His sorrow.

            I knew a supernatural reality as a man prayed with us over Julia as she passed in to the arms of Jesus, and as we experienced the same sorrow as God Himself experienced when he watched the agony of His Son on the cross.

            And I know that the answers to the “whys” don’t exist for most of us who have suffered: who have cancer, who have lost children, who starve, who have no hope, who are hurt by an adulterous relationship, who are addicted, who are abused, who are mentally battered.  Instead, the kingdom of heaven comes as we mourn together and become more like Jesus through suffering.

            I knew hundreds of encouraging notes and letters as we grieved.

            I knew Julia's first giggle, just a few days before she died.

            I knew the joy of watching Natalie love her baby sister.

            I knew the perfect peace that surrounded little Julia, as she patiently waited.

            I knew the way she loved me, with her eyes following me everywhere I went, though she couldn't vocalize or move in the way typical of infants.

            I know that Julia was rescued, that she was saved from this world and its limitations.

            I know that Jesus has overcome this world, and His resurrection offers hope that my Julia is safe and restored.  

            I know that Julia Christine is His, with her name literally meaning “Young follower of Christ,” and her first two initials reminding me of my savior, Jesus Christ.

It’s not the heaven I wanted.  No, I wanted heaven to be simple and happy and peaceful – and full of the things that I desired.  But I was instead given an enlarged heart and soul, and a love for people with Down Syndrome.  Gradually, I was given a deeper appreciation for life, though at times it did not seem to be worth living.  I was thankful for a God who did not expect me to feel a certain way, but embraced my sorrow as I sought Him. 

Mother’s Day marks exactly 5 months since Julia died…and also marks that Julia has now been with Jesus longer than she was in my arms.  This is a heavy moment, but also in some ways lighter than I anticipated.  I’ve realized that, for me, it’s not so much the anniversaries that are hard, but that every day is hard…with each day getting a little easier.  Today is no different than yesterday, or tomorrow…I’m just one step further along in my grief journey.

And this little light?  She is doing beautifully.  She experienced deep confusion as she grappled with what it meant to lose her sister.  She worried about her mom and dad, and these anxieties caused her to develop a stutter and lose some of her hair.  The stutter is gone, and her hair is growing back now, and all of our spirits are growing back, too.  Natalie has forgotten some of what has happened, and now it’s just a fact in her memory, detached from the emotions: “Julia’s in heaven with Jesus.  Because He wanted her to be with Him.  I want to go there, too!”

Amen, little one.  But, not so fast!  You're staying here with us, as we've reassured you many times.

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.