Unexpected Grief

Grief is an interesting thing. In the immediate aftermath of a tragedy, it is acute and intense. As the weeks and years go by, it ebbs and flows. Sometimes I’m able to anticipate events or situations that will be difficult. And sometimes I am caught completely off guard – like a punch to the gut that I didn’t see coming.

I know July 10th is arriving soon, and I am well aware that day will be hard for me. Just like his birthday and death day, the diagnosis day was the day this whole grief journey started for me. I can plan for it and prepare my heart for the extra tender state it will be in remembering the events of that day.

But blueberry picking this past Saturday? Didn’t see that one coming.

I thought I just wanted to do something different with my littlest two than the usual weekend morning at the house while Daddy and Adele had their time together. I thought I’d try out the only blueberry picking farm in the greater Charlotte area. I thought I was just sharing a fun experience with my one-and-a-half year old, with (hopefully) sleeping newborn baby in-tow. I thought we would get some homemade blueberry ice cream that was advertised after being out in the hot summer sun that morning as a way to cool off.


And we did all of that. But as my two babies fell asleep quickly in the car after a fun time at the farm, only then did I recall the last time I went blueberry picking: In the North Carolina mountains, shortly after discovering the baby boy inside of me would not be compatible with life outside of me.

The last time I picked blueberries was with Arthur.

When I realized it, I was thankful to have a 30 minute drive home and some sleeping babies – having the space to miss him a little extra that day.

The Wedding Balloon

The death of a child is something you never “get over”, because you grieve each milestone they would or could have reached if they were still alive. First smile, first steps, going to school, if and what college they would attend, getting married, wondering what career they would end up in. When a childs life ends, there are so many dreams, big and little, you are robbed of that you will never see come true.

And when you have living children, you have tangible examples of what could have been for the missing sibling. That is how every happy moment for our family can be accompanied by a twinge of pain.

But I want to share with you a milestone that I never thought I’d get with Arthur, because of some sweet friends who are like family. These are some of the people who were there during our family’s darkest time, and who have continued to love and celebrate our son in the seasons that have followed.

Brian was involved with our college ministry when we were at Elon University, led in a discipleship group by Artie, traveled with us on a short-term trip to South Africa, lived with us for the summer before Hope was born, has lent a hand with many of our yard projects, and continues to this day to regularly meet up with Artie.

Susan has worked in the Campus Outreach office with Artie since we moved to Matthews in the fall of 2013. She is a co-worker and partner in ministry to my husband, she has become a dear friend of mine, and she is one of my kids favorite people. She has babysat my children and loved them as her own. And she has been our on-call person to come to the house when we have gone into labor for my deliveries. She is affectionately called “Sue-Sue” by Adele and Hope; she is one of the many family and friends who got to hold Arthur; and we couldn’t imagine what our lives would have looked like the last few years without her.

Brian and Susan recently got engaged this past Christmas and set their wedding to be at the end of March.

Brian asked Artie to be one of his groomsmen. Susan met me and the girls for lunch one day in the beginning of her wedding planning with a special question. She wanted to ask Adele and Hope to be flower girls**. Adele had her first try at being one at my sister’s wedding this past summer, and was excited about the prospect of getting to do it again. It’s one of those dreams I’ve seen come to fruition for her.

And then Susan asked Adele if she would carry a balloon for Arthur to be represented in the ceremony too.

*cue the tears*

There have been many points along this journey where people have entered into the hard moments and met me in my grief. People were amazing when we found out the news of his diagnosis and in the months after. People have been great at remembering the important dates and have anticipated certain events being hard for me. They have been there to help us remember and celebrate him, even as time is moving on.

I don’t cry as often these days like I used to, but I never stop wondering what life would be like if he were here in person. What would his personality be like? What would his relationship with his sisters look like? What would it be like to see him and his other little 2 year old buddies? And for an occasion like this, as I planned for my girls to participate in this wedding, I couldn’t help but imagine him being in the wedding party too.

I’ve said this a number of times to others, but for the tragedy of what we have been through in losing a child, we have had it so good. People have been there for us at every step of the journey so far and have loved us better than we could have imagined.


Adele walked down the aisle with a balloon representing her brother, and after the ceremony – like we did in the months after his birth and death – Adele and Sue-Sue released the balloon together.

Mr. and Mrs. Gerwig – thank you for the special relationship you have with all the Van Sciver kids, for making a dream come true for me for my son, and for loving our family so well. What a privilege it was to be a part of your special day.

Susan Arthur

**While it was a nice gesture, we opted to have Hope NOT participate (as you can see from the pictures). If you know Hope, this decision makes total sense. If you don’t know Hope, having a 17 month-old, during nap time, try to walk down an aisle with other kids (one of them being a sister with a balloon) sounded like a recipe for a not so great time for her, or me, or anyone else involved.

Being Arthur’s Mommy

More and more these days, I am known to some as Adele’s or Hope’s mommy. This relatively new identifier is something I have welcomed over the years as the circle of people around my kids continues to grow. I love being their mom and being identified with them.

Being almost two and a half years since Arthur’s presence in our lives, I don’t get to be known as “Arthur’s mommy” very often.

But there are a few days, every once in a while, I get to be just that.

I was initiated to by a group of nursing students who are working on a group project for a genetics class, and I got to share with them about our journey having a child with a fatal genetic disorder. I got to share some about his condition – anencephaly – that is deemed “not compatible with life outside the womb”. I got to share how we faced some very hard decisions about continuing the pregnancy. I got to share about how we chose the path of excruciating emotional pain, but mysteriously found joy and happiness in the darkness of it all. I got to share how his life and death made me cling to Jesus more than anything else in this world ever has. I got to show how a little life doesn’t have to be long to be meaningful and leave an impact.

Today, I wept afresh over what could have been and what I expected life to be like; but as I have embraced this role I have been given as a bereaved mother, I can rejoice and give thanks for opportunities like today – getting to share the beauty of his brief but impactful life.

What a privilege to have been chosen to be this little guy’s mother.

The Need To Remember


Photography has been a hobby of mine for a while now and in this digital age I have made an effort to make sure my photo files don’t remain just on the computer, but printed for us to have and look back on. I am in the annual habit of making a family photobook, filled with hundreds of pictures from the past year. In addition to the yearly photobook, I wanted to have one made documenting our journey with Arthur.

Shutterfly is my favorite site to use and for a year and a half, I’ve had a book for Arthur made and sitting in my “Projects” folder, waiting to be completed and printed. It contains all the photos I had from my pregnancy with him and his short life, and I also included the blog posts from when we started until shortly after his death. By the time I completed it, the book was 80 pages long and too pricey to fit in my budget. But a special deal came last month and I was able to get it for 80% off. I was thrilled to finally have a chance to get it printed.

The book arrived last week and I could not have been more giddy receiving a package in the mail.

As a bereaved parent, items like this are so helpful as we try to hold onto memories of the time with our child. While some dimensions of our memories can never be recovered – his smell, what it felt like to hold his little body in my arms, the feeling of kissing his cheeks – the photos help us to remember what he looked like, and the blog entries can evoke some of the emotions of that time.

It is a treasured possession that I hope will be passed down in my family some day – a testimony of the meaningfulness of even a very brief life.


When I read through the Old Testament, I see a frequent pattern of how God’s people relate to Him and it often baffles me: God does a miraculous work of deliverance –> the people rejoice for a little while –> the people forget, grumble and doubt God –> God rebukes them –> and God shows great grace, and provides for and delivers them again. I find myself pridefully thinking how I would respond totally different if I was in their circumstance.

But then I consider my life and I realize I am much more like them than I initially thought. God has brought me through one of life’s great tragedies; He has grown and deepened my trust in Him; and He has set before me the hope of heaven like I had not experienced previously. Yet, since then I have given into anxiety and fear over much smaller things. I have found in my own life a pattern similar to that of the Israelites.

In the chapters after the giving of the ten commandments, this warning repeats itself: “take care lest you forget the Lord” (Deut. 6:12, 8:11). Those who have seen God do mighty things are prone to forget. When we forget the Lord and forget His ways, we are anxious. We are fearful. We grumble and complain. We doubt. We sin. Like the Israelites, if I do not take care, I can easily forget who He is and the great mountains He has moved in my life. After considering these things for myself, I understand why the refrain “remember the Lord your God” is found over and over in Scripture.

You shall not be afraid of them but you shall remember what the Lord your God did to Pharaoh and to all Egypt, the great trials that your eyes saw, the signs, the wonders, the mighty hand, the outstretched arm, by which the Lord your God brought you out. Deuteronomy 7: 18-19

And you shall remember the whole way that the Lord your God has led you these forty years in the wilderness… Deuteronomy 8:2

My soul is cast down within me; therefore I remember you… Psalm 42:6

I will remember the deeds of the Lord; yes, I will remember your wonders of old. I will ponder all your work, and meditate on your mighty deeds. Psalm 77:11-12

Remember the wondrous works that he has done, his miracles, and the judgements he uttered… Psalm 105:5

Remembering is an important discipline in the life of a Christian; in good times, to keep us humble and dependent on Him, but also in bad times when we have difficulty seeing beyond our circumstances. What is it we as Christ followers are to remember? Who God is, what He has done, and what He has promised for those who are His. Remember how He created the earth and all that is in it, and that nothing is out of His control. Remember His faithfulness of old throughout history. Remember the empty tomb and that death has been defeated forever. Remember how he has been faithful to you personally in specific ways and how he has delivered you from great difficulties before. Remember what He has promised for His children for this life, but more importantly for the life to come. Remember God. And when you do, you can better trust Him in your current circumstances and enjoy being in His loving care, even if it feels like He isn’t there.

I titled the book “Remembering Arthur Neale Van Sciver”, but I think the book does much more than that for me. It is the story of his short life, but even greater, it is the story of God working in an ordinary family through a great tragedy to do extraordinary things. I think a more appropriate title would be “Remembering God Through The Special Life of Arthur Neale Van Sciver”. This is why I am thankful to have this book in my possession. Yes, it helps me to remember my son, who is so deeply loved. But it helps me remember my God, who met me in my deepest sorrow and disappointment, and made it for my good and for the good of others. If there are days, or weeks, or dare I say years that I forget, I pray my Bible and these remembrance tools will help bring me back to the God who has done marvelous things for me.


Everyday Grief


We are well over a year past Arthur’s passing, and life has become more normal again. I enjoy doing things together as a family and with others. I have a good time being spontaneous from week to week. I cook meals. I delight in my girls. I laugh a lot. The intense moments of grief that marked Arthur’s pregnancy and shortly after his death aren’t as commonplace in my life these days. We are past all the calendar “firsts” without him with us. While there is the occasion I am unexpectedly hit by the grief-train, I have generally experienced the truth that time does heal.

But it does not completely heal.

The pain is not so sharp anymore. And it’s not because I have “moved on” or think less of Arthur. No. I still think of him every day. It’s just that the grief has changed.

I am currently a stay-at-home mom, but that doesn’t accurately describe my day. I like to get out and do things – go to the park, run errands, participate in church bible studies, hang out with other mommas in their homes, visit Daddy at his office, take the girls to do fun things. There is usually one day out of the week that I actually “stay at home” for the day, and even if we are, we are outside walking around our neighborhood. I am extroverted. I love it. But the very social interactions I enjoy are also the source of my everyday grief I experience now.

Other moms at the park or gymnastics, the sweet old lady working at Chick-fil-a, cashiers at the grocery store, strangers standing next to me in line somewhere for something. It is nearly impossible for them to NOT say something when I have a curly-head, blue-eyed, tutu-wearing two year-old and smiley (or sleeping) newborn in tow.  Interactions with new people always lead to questions or comments that start a conversation between strangers:

“They are adorable. Don’t you love having girls?”

“Two and a half years, that’s a good age gap.”

“Daddy’s quite outnumbered at your house.”

“Two young ones, you’ve got your hands full.”

And the one I seem to get almost every day in some shape or form – “How precious. Are these your only two?”

The very questions I would probably ask people myself are ones that now pose for me an internal dialogue with myself.

Do I mention that I have a son? Do I tell them that there is actually a sibling in between them? That Daddy’s only slightly outnumbered? That my hands could be even more full?

Do I have the time to tell them the truth? It’s just an innocent question, would they even want to hear it? Or would it be easier to smile and move on? I just came in here to pick up something quickly, we’ve got nap time to get home to. Do I have enough time? I’m tired, do I really want to go there right now?

I wish it were easier. Maybe it would be if I had a shirt that said, “I have a son – he’s no longer with us, but is still a part of our family.” Then people could just know and we could avoid the awkwardness of their lighthearted questions bringing a few tears as I mention his existence in our lives. But that is not how life works.

But just as it was in the thick of heavy grief, as I felt deeply and pushed through it, I also experienced measures of joy. While it brings me a small amount of pain to have these interactions almost daily, I have found that it too has many benefits:

  • It feels good to speak the truth. I have never regretted answering those questions truthfully.
  • It honors Arthur’s existence, albeit shorter than we had hoped.
  • It helps me to move through the grief and heal, as opposed to ignoring it or stuffing those feelings.
  • It opens the doorway to genuine conversation about the hard things in life.

Telling people that these girls have a brother, that I have a son who was born, lived, and died has brought incredible depth to my conversations. It brings about empathy and compassion. It even brings connection as some people open up about things that otherwise would have taken years to know.

We bought some Girl Scout cookies from some neighborhood girls, and upon delivery of our Samoas and Tagalongs, when asked about my kids, naming Arthur among my children led to the revelation by the mom and child of an older sibling who was stillborn 12 years ago. How they haven’t forgotten him and how much they miss him. And all I thought I was getting that day was some overpriced cookies. But I stood there on my porch, having the first real conversation with this family, with tears in our eyes as we talked about our sons, their names, and the memories we have of them.

Walking this road of a parent who has lost a child is a complicated one, but has brought more depth to my life and interactions than I ever could have imagined.


“Adele, who do anchors remind you of?” “My brother, Arthur.”


Hope has no ability to understand she has a brother yet, but when we are sitting in her room, her favorite thing to look at on the walls is the banner with his name on it. Adele has one too, and Hope’s is currently at the church, but she always ends up staring at his. It warms my heart and makes me ache all at the same time.


New Years Blessing

It’s been a little over a year since we held Arthur in our arms, and we’ve now gone through our second Christmas and New Years without him in our presence. We are now past all the calendar “firsts” without Arthur here with us. But grief is a complicated thing. While it has gotten better with time, part of the sadness I experience now is that life has gone back to “normal” and the weight of grief isn’t so heavy on me. As time moves on, the memories fade and we even begin new relationships with people who have no knowledge of what we’ve gone through with Arthur. I didn’t quite know what to expect this time around this holiday season without a toddling little boy around. For grieving people, the holidays are something to just survive.

While there have been some tears shed, I have been caught off guard by how much he has been a part of these past few weeks. To kick off the Christmas season and his birthday, women from my church gave me boxfuls of yarn to give to the woman who makes hats for babies with anencephaly. I just sent those out this past week and the gift was received in great joy. I can’t wait to see what will be made and I know many families will be comforted by receiving one of these – all because a community of people remembered Arthur.

He was remembered through the Christmas holiday by our families. And he was included in the stockings, both in our home and in his grandmother’s home where we spent Christmas this year.2016.12.25_217.jpg

This New Years, I spent it like I have the past 10 years. At a conference with the ministry we work for, with hundreds of college students and staff seeking to learn more about what a relationship with the God of the Bible is like. 10 years ago, I was a junior in college. 10 years ago I was just beginning to be established in my faith. 10 years ago I was loving all that I experienced at that first conference and it fueled my faith as I returned back to campus that spring semester. 10 years ago, I had suffered very little – maybe some middle school and high school drama and small incidents related to sports. But the things I started to learn 10 years ago helped to prepare me to walk through the dark valleys I have over the past couple of years.

Arthur was a part of our conference in a special way this year. Artie was asked to speak on the topic of suffering and what the Bible says about it. As I listened to him speak to a room full of college students, through tears I was beaming with pride for my husband who had encountered more of God because of the trials he has faced since college, and for my son who was such a small, but mighty tool in the hands of God to teach us and others more about Himself.


If you care to listen, you can find Artie’s seminar talk on the conference website. His talk is titled “Why Do We Suffer?” and you can listen to it here.

Missing my son is something I will do throughout my lifetime, and I can say the sting of grief has diminished with time. But as time goes on, I am continually reminded that although Arthur’s life here was short, it was and still is incredibly meaningful.

How do you measure a year?

I wish I had more time to write these days. My heart and my head have been full with so many things and I feel the need to get them out on paper (or screen). But the needs of a newborn are many, and they are needs I am happy to be busy with, because you don’t always get them with every child. We did our final balloon release of the first year of Arthur heaven-side. I took Adele to the balloon store a final time on his birthday. We went for the big balloon this time. A balloon with balloons on it seemed to be the perfect one. And because it’s been the year of the cupcake for Adele, I got a second balloon. We brought these to Arthur’s birthday party, but we saved these balloons for a final balloon release on his anniversary in heaven.





How do you measure a year? In a child’s first year of life, its usually in pounds and inches, length of hair, steps walked, words spoken, photos taken, and foods eaten. I wonder what those all would have been for Arthur if things hadn’t turned out the way they did.

But our measurements have been different this time around. It’s been in balloons released, pages written, perspective gained, compassion received, friendships formed, relationships deepened, hearts encouraged, minds changed, and lives impacted.

When I think of what I ultimately want for my children, as a follower of Jesus, Arthur is a dream come true – he has arrived safely in the presence of God and he has impacted lives for eternity. His little life influenced a multitude of people to what really matters. While there are certainly things we are missing out on in regards to his physical development, there is so much more we have gained. What a privilege it was to be entrusted with such a life.

Behold, children are a heritage from the LORD, the fruit of the womb a reward. Like arrows in the hand of a warrior are the children of one’s youth. (Psalm 127:3-4 ESV)

I’m not sure how you are experiencing time there, but whatever it is I know it’s wonderful. Happy 1 year in heaven, Arthur Neale Van Sciver!


Arthur’s Birthday Celebration

We around surrounded by some of the best people. People who really get “Weep with those who weep, and mourn with those who mourn.” It is so refreshing. One of the best things someone can do for a parent who has lost a child is to acknowledge their existence, to speak their name. Arthur lived long enough to have a birth date and a death date that didn’t land on the same day. So, to me his birthday is full of happy memories. I woke up yesterday morning ready to celebrate him – and celebrate we did! As the day went on and we gathered together for a little birthday party, and as people showed their anchors and sent off balloons, and as Artie and I received a constant flow of messages, we felt the love we needed as we faced Arthur’s first birthday without him here. For all of that, we say “Thank you!” Thank you all for loving our family so well.

We started the day with birthday cinnamon rolls.

Some friends of mine planned a birthday party and many moms and kids came out for the fun. We had milk and cookies – the nightly treat we indulged ourselves in the week leading up to Arthur’s birth. There were some Christmas crafts for the kiddos and people brought yarn as gifts to be used to make hats for babies with anencephaly. We ended the time with a balloon release, just like we have done every month. Adele had a fun time sharing in our celebration with friends. On our way home, she said, “Can we go to Arthur’s birthday party again?”


And friends from all over wished Arthur a happy birthday. From here in Charlotte, to Florida and California, and even South Africa, here are some of them:


Happy birthday, my sweet Arthur! Clearly, you are SO loved.

On The Night You Were Born

On The Night You Were Born

by Nancy Tillman

On the night you were born,
the moon smiled with such wonder
that the stars peeked in to see you
and the night wind whispered,

“Life will never be the same.”

Because there had never been anyone like you…
ever in the world.

So enchanted with you were the wind and the rain
that they whispered the sound of your wonderful name.

It sailed through the farmland
high on the breeze…

Over the ocean…

And through the trees…

Until everyone heard it
and everyone knew
of the one and only ever you.

Not once had there been such eyes,
such a nose,
such silly, wiggly, wonderful toes.



For never before in story or rhyme
(not even once upon a time)
has the world ever known a you, my friend,
and it never will, not ever again…

Heaven blew every trumpet
and played every horn
on the wonderful, marvelous
night you were born.

You can read my version of Arthur’s birth here.

You can see our Now I Lay Me Down To Sleep photos from his birthday here.

11 Months

In all the excitement of your little sister being here, we have not forgotten about you, sweet boy! If anything, I have thought of you more. Wishing I could have held you longer. Fed you, burped you, changed you, snuggled you more. While your Irish twin has been a very content baby so far, you still win the prize for the most peaceful baby. Daddy picked your balloons this week, but Adele wanted to send an extra one – one given to us for Hope. Just so you know, its a girl!



We got news this week that you have another girl cousin – we are so excited to love on another niece when she comes in April! You are WAY outnumbered so far, little man.

Happy 11 months in heaven, Arthur Neale!


Just love all my babies! Top left – Adele, Bottom left – Arthur, Right – Hope