Checkout Lines and Receiving Lines

It’s hard to believe it’s been nearly two months since two of the most intensely emotional days of my life: the day we met Samuel and the day we said goodbye. Sometimes I feel like this was all just a dream. It’s surreal to look at our family now and from the outside, our life looks almost exactly the same as it did a year ago. It’s just Bob + me + one cute toddler, but now no pregnant belly and no newborn baby.

As I meet new people, or bump into friends I haven’t seen since the summer, it’s strange to know that unless we tell them about Samuel or they happen to read our blog, they will never realize that our lives just changed forever.

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Almost every week of my pregnancy, I went grocery shopping at Wegmans. As I pushed the shopping cart with Daniel, I felt so much joy inside because I loved getting time with my two boys while I still could. It seems like such an ordinary thing, but it was one of the few places I went where no one knew about Samuel, and complete strangers would congratulate me and make the normal pregnancy chit-chat. Each visit to the grocery store marked one more week Samuel was still with us, and I never knew which one would be his last.

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The first time I went back to Wegmans after Samuel died, I was on my own that day. I felt a new depth inside me, and I almost wondered if I looked different. I was so aware of my recent loss and grief, but I doubted anyone looking at me would guess I was a newly-bereaved mother.

I pushed my small cart through the produce section, slowly for a change instead of rushing through my list, and I looked at the faces around me. I felt compassion for the other shoppers and workers, wondering what kind of suffering each person has walked through. I know I’m not alone in the heartache and pain we experience in this world.

I passed a young man who helped load groceries into my car a couple times when I was very pregnant just weeks earlier. Did he recognize me? Would any of the cashiers remember me and ask where my baby was? 

As I joined the checkout line, I spotted a young couple ahead of me holding a newborn baby. I veered my cart at the last minute to switch to another line. Two weeks earlier I’d held Samuel in my arms as he took his last breaths, and my emotions were still too raw. I didn’t know if I could look at another newborn too long without breaking down crying.

I didn’t recognize the cashier who greeted me, so I was able to get through that trip as just another normal shopper. I am acutely aware that we interact with people in seemingly ordinary ways each day, but we have no idea what a person might be going through. I have a feeling the way I look at people around me will never quite be the same.

When we started this journey last September, we didn’t know where it would lead. But Bob and I both felt like we should share Samuel’s story through this blog. This was a big step for me, because I’m normally a very private person who rarely posts on Facebook, and it’s vulnerable to share publicly about something so close to my heart. Bob always reminds me not to compare our situation to anyone else’s, but sometimes it’s hard to tell our story because I know many others have walked through much worse. But this is the story we’ve been given and I feel compelled to tell it, and I trust that God will touch countless hearts through Samuel’s brief life because we chose to share him with you.

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We have been truly touched by the friends, family and even strangers who have prayed and taken time to express love and compassion, for us and a little baby they never even met. So many people attended or watched Samuel’s memorial service online. I never expected to enjoy a memorial service as much as we enjoyed Samuel’s. This might seem strange, but I told Bob later that I liked Samuel’s service more than our wedding day! Partly because our incredible church family came together and did most of the work to put together an amazing service and reception!

But mostly, I think it’s because of our receiving line and all the people who came. I used to think receiving lines were a bit awkward and superficial, because I never know what to say when there’s only a few seconds. We actually skipped doing a receiving line at our wedding to save time, but I later regretted not making time to greet everyone who came to our wedding. I felt a little bad for the long wait everyone had after Samuel’s service, but it was incredibly special for us to hug and greet each person who came to honor his life with us.

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I had worried we might come home after Samuel’s service feeling sad and alone, but I returned with my heart overflowing. I still picture the faces of different people who came, and even if I don’t remember exactly what either of us said to each other, I feel so warm inside just knowing that they cared enough to come. I know many more would have loved to be there, and I was surprised so many could make it on such short notice!

I think from now on I will wait in receiving lines, and stop feeling awkward about it. I’ve discovered that with receiving lines, sympathy cards, and conversations that it doesn’t matter so much what people say or write, it’s just meaningful that they take time to show they care.

Since Samuel’s memorial service, my heart has been overflowing with gratitude for the people in our lives. I wish I had time to personally thank every single person who prayed, gave us medical care, helped with the memorial service, sent a card, gave gifts and flowers, brought a meal, took time to listen or give a hug, and showed us love during this season. Please know your expressions of care and compassion have brought so much warmth to our hearts in the midst of our grief. I can’t imagine going through any of this on our own — without Jesus, or without the love of our family and community who has surrounded us during this time.

We never stop thinking about Samuel, and it’s been very healing for us to get to share him with so many people. Thank you for taking time to care and remember Samuel with us.

Samuel’s Memorial Service [Videos]

Last Saturday we held Samuel’s memorial service. I understand events like these are often tough for families, and rightly so. But I went into Samuel’s service excited – I was happy to share Samuel’s life with so many people.

Because of how short Samuel’s life was, only our immediate family actually got to meet him in-person. That was sad for me, because we loved getting to share him with people. Samuel was my son, and I was proud of him, and happy to introduce visitors to him.

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His service was an opportunity to share about him, and I was not inclined to hold back in sharing stories about his birth and life with us. I ended up speaking for 31 minutes (!), which feels a bit long, but we had so many great things happen during our time with him, I didn’t want to hold anything back.

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In the end, my heart was full that day, as it has been since then. In the future, I’ll share some thoughts on the uniqueness of our grief for Samuel’s loss, but ultimately I was excited to share Samuel’s story with so many friends and people who care. His memorial service was our chance to do that, and we were touched that so many people came or watched it online.

Joanna and I want to share the service with anyone who would like to experience Samuel’s story. This video is the slideshow we shared during the service. For me, it’s powerful, emotional, significant, difficult, beautiful, and painful, all at the same time. I’m so happy we have these pictures and videos to remember him forever.

We also have a great recording of Samuel’s memorial service. It’s 85 minutes long, so I’ve posted some notes about timing below if you want to skip to certain sections. Of course, I think the whole thing is wonderful, so feel free to enjoy it all the way through 🙂

Service timing:

  • 0:04 – Pastor Josh’s opening remarks, announcement, and prayer
  • 2:31 – Song: Great are You Lord (All Sons and Daughters)
  • 7:45 – Scripture reading (Psalm 23) by Joanna’s sister-in-law Bethany
  • 12:05 – Fingerprint tree and special music: Light of the World (Lauren Daigle)
  • 17:43 – Joanna’s sister Genevieve shares
  • 22:00 – Bob’s sister Kristina shares
  • 26:43 – Bob shares
  • 56:48 – Slideshow of Samuel’s life
  • 1:04:16 – Pastor Josh’s message
  • 1:16:16 – Song: I See Heaven (Bryan and Katie Torwalt)
  • 1:21:06 – Pastor Josh’s closing remarks

Joanna and I hope these videos are a blessing to you, as they have been to us.

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Samuel’s amazing NICU nurse came to the service – we love you, Amy!!!

 

 

Saying Goodbye

Update: we’re having a memorial service for Samuel on Saturday, February 4th, 2017. All are welcome. See our invitation for details.

Samuel David Kniley passed away peacefully in our arms today, Wednesday, January 25th at 4:30pm. We didn’t think his health would worsen so quickly, but today worked out much differently than we expected.

Samuel was doing well his first day, and was scheduled for surgery at 11 this morning, but overnight his breathing capacity started to decline. This is a common occurrence in Trisomy 18 babies, but Samuel started down that path sooner than most.

The medical staff started to give him increasing amounts of breathing support as his numbers worsened. In the morning his changes were gradual, and they thought he might make it another 24 hours or so.

img_4371But after lunch he took a turn for the worse and needed increasingly frequent additions to his oxygen support. He rapidly approached the upper limit of what the medical team could provide, and we agreed the best thing we could do was hold him and keep him comfortable.

Joanna sat in a chair next to his bed and we handed Samuel to her for the first time since right after she delivered him. Our wonderful nurse gradually disconnected his wires and tubes as they became unnecessary, and Joanna got to hold our beautiful little boy as his breathing became less frequent.

Eventually we sat together, and Joanna graciously let me hold Samuel for a long time. Joanna carried Samuel for nine months and delivered him into this world, and she allowed me to hold him as he left it. His heartbeat continued for over an hour, and finally stopped at 4:30pm.

Most of our family joined us in our room to hold Samuel for their first time and cry with us. Our nurse helped us make some memories and keepsakes, and Joanna and I got to pray and enjoy Samuel on our own after our family left.

img_4415img_4446img_4503We are so profoundly thankful for the gift that Samuel has been to us. We had 38 hours with him and are heartbroken beyond words to have lost him so soon, and we will grieve his absence for a long time to come. But he will always have an incredibly special place in our family as our second child, and we will cherish his memory forever.

We’re on track to come home from the hospital tomorrow. Our plan is to lay low for a while, and we’ll probably have a service in the next few weeks to remember and celebrate Samuel’s life.

We’re sad that we didn’t have time to share Samuel with so many of our friends and extended family in-person, but we’re so thankful for the many people who read this blog and express so much love and support for us. We might not be able to respond to every message we get, but please know that we receive all of your love with great affection and kindness in this difficult time.

Thank you for standing with us. We are thankful, and devastated, and grateful, and blessed, all at the same time.
– The Knileys

Awaiting Samuel’s Arrival – Week 40

We just arrived at the hospital, eagerly awaiting Samuel’s arrival. We’re starting the induction process this morning, and we hope this will give us the greatest chance of meeting Samuel alive.

This journey with Samuel has forced us to answer some of the most intense and gut-wrenching questions of our lives. Now all of our plans and desires will meet reality, and we’ll finally see how many of them come true – along with everything else that comes our way that we never expected.

We likely won’t post here again until Samuel arrives. Please pray for:

  1. A quick and uncomplicated natural delivery.
  2. Samuel to be born alive!
  3. Peace-filled wisdom for Joanna and me as we make decisions during labor and delivery, and regarding Samuel’s care.
  4. Everyone involved to make powerful memories and appreciate every part of this experience.
  5. A tangible sense of God’s presence and peace throughout labor and during our time with Samuel.

Thank you for your love and care for us. We need your prayers very much right now.

Waiting – Week 39

We’ve been quiet with updates recently, in part because it often seems like something is about to happen – then it doesn’t. It’s tough to write when there might be a major change within days. That’s still possible, but here’s the latest:

Our last blog in December delivered the wonderful news that Samuel was growing, right when the doctors saw signs he might be trailing off. This was one of the best Christmas gifts ever. We actually got to enjoy the holidays!

I was surprised at how little his situation was on my mind over Christmas week. Celebrating with Joanna’s family was great, and my sister’s family came up from Baltimore for five days. We wouldn’t have been part of those events if we were in the hospital over the holidays, and it was the closest I’ve ever felt to a reprieve: a wave of tragedy was approaching, then suddenly receded. It was a happy time.

Two weeks ago we had another ultrasound, and this delivered the news we had initially feared: Samuel’s growth had slowed way down. Babies are supposed to grow significantly in their final weeks, so this is generally a problem.

But this time the doctors had surprisingly little urgency regarding action we should take. Samuel was 37 weeks, which is basically full term, and they didn’t think an induction was necessary if we didn’t want one.

This was a surprise. We were packed and ready to go to the hospital at the first sign of trouble, but we decided to wait for a few days. Those days stretched into a week, and now two.

Yesterday we reached 39 weeks, and the doctors’ message is much the same: “If you want to induce, we’ll make it happen. If you want to wait, no problem.”

We’ve been wrestling with this difficult choice for two weeks now. Do we wait days or weeks more, hoping Joanna goes into labor naturally, risking the possibility of stillbirth along the way? Or do we induce, even though Joanna hasn’t progressed much toward labor? A long induction could be exhausting for Joanna, reducing the energy and attention she can give to Samuel after he’s born.

It’s a terribly difficult question to answer because of its consequences. Waiting on a natural start to labor could take a while, which gives Samuel’s health time to fail in the womb. A long induction could sap Joanna’s energy. And bringing Samuel into the world might mean he’ll die soon afterward – how can we decide to move that date any sooner?

I honestly don’t know how to make this decision, so we talk, and we pray, and we wait, hoping that either Joanna goes into labor naturally before Samuel passes away, or we both feel enough peace or a sense of urgency to start an induction. So far, neither has happened.

In the end, I still very much hope to meet Samuel alive. I have no idea if we’ll get that privilege, but we hope he’ll come soon, and that we’ll have energy to give him when he does.

Please continue to pray for us. We’re less than a week from Samuel’s due date, and it’s hard to believe we’ve made it this long! Please pray for him to arrive soon and grace for all the decisions we’ll need to make.

SPA Appointment – Week 25

This week I had my first SPA appointment, though not the kind you might think! 🙂 After my 20-week ultrasound revealed Samuel’s Trisomy 18 I was transferred to a high-risk pregnancy group, Strong Perinatal Associates, affectionately called by its acronym SPA. Women literally call in and say, “I’d like to set up a SPA appointment…” 🙂

On our way, I felt tense for some reason. As Bob and I talked in the car ride, I realized I was nervous about two things: I didn’t know how the doctor would view our choice to continue this pregnancy, if we would be misunderstood or unsupported. And knowing how I am at doctor’s appointments, I always feel bad if we take too much of a doctor’s limited time, and I knew Bob had a growing list of questions he’d prepared over the past five weeks. I really wanted to be able to leave with a sense of peace and our questions answered, but when I’m feeling rushed I don’t like to ask all our questions. We arrived early and Bob spent a few minutes praying that I would feel peace, that our appointment would go well, that we’d feel respected and supported and leave with our questions answered.

Within minutes I started to relax, from checking in and joking with the friendly receptionist to being whisked right back by the nurse without needing to sit in the waiting room. Then we met with the most wonderful nurse practitioner I could have asked for! She didn’t even look at her computer or run through her standard questions until about 45 minutes in. She first wanted to hear how we are doing personally, and answer any and all questions we had for her. Within the first few minutes she asked if we’d chosen a name and immediately lit up saying, “I don’t know if you’re religious, but Samuel is my favorite name for a boy!” From then on she referred to Samuel by name. She was incredibly supportive of our decision to enjoy whatever time we have left with Samuel, and encouraged us to choose what we feel is best for our family and assured us we will be supported by their staff and the teams at the hospital in whatever decisions we make.

I have no idea how long they typically spend with patients, but we spent over two hours meeting with her, the doctor who originally delivered the news to us at my ultrasound, and the genetic counselor who will be coordinating our appointments with all the other groups (NICU team, neurosurgeon, palliative care, etc.). I knew it was probably an unusually long appointment even for them, but they were so patient with us, genuinely caring to make sure all our questions were thoroughly answered as we move forward. I walked out of there so thankful that God had answered Bob’s prayer and provided exactly what my heart needed!

As we learn more about Trisomy 18, it seems the longer this pregnancy continues there will be many complicated decisions before us. We will probably need to have three birth plans in place to cover the different scenarios: Samuel could be stillborn at any point right up until birth, he could be born prematurely, or he might make it full-term. If he is born alive and closer to full-term, we have many decisions to make about how much to intervene versus simply provide comfort care until he dies. Some Trisomy 18 babies only survive a few minutes or hours, some a matter of days or weeks. A small percentage survives longer. They told us the average life span is about 5 days. Knowing a baby’s life will likely be brief, many couples choose to just hold and love their baby in the time they have, and say goodbye peacefully rather than send them off to risky surgeries that might not prolong their life or significantly increase the quality of it.

From the problems the ultrasounds have shown, unlike many Trisomy 18 babies, thankfully Samuel’s heart is not an issue that would cause immediate problems after birth or require surgery. It seems the two major things for Samuel are 1) Potential feeding and breathing problems that most Trisomy 18 babies have (and we won’t know the extent of those issues until after birth). 2) Spina bifida – there is a hole at the base of his spine that would require fairly immediate surgery. If left untreated, he would eventually contract an infection that would take his life.

Our appointment was a sobering reminder that there are no “good” outcomes, just many hard decisions before us – decisions we don’t want to make for our child regarding life and death. We are asking for God’s wisdom, that He would lead us every step of the way and continue to give us peace. We don’t know the outcome, and no matter how much we plan or prepare, there’s so much that’s simply beyond our control. I’m so thankful He already sees the future and knows the number of Samuel’s days. And He is with us, taking care of our hearts in this process. If we look only at the predicted outcomes, it feels grim. But that’s not the whole story…

At church this morning, this line from a worship song stirred my heart: “Now death, where is your sting? The resurrected King has rendered you defeated!” Tears escaped down my cheeks as I pictured the day coming when I’ll hold my sweet Samuel and say goodbye. But at the same time, hope rushed into my soul knowing that Jesus died and was resurrected to take away the sting of death. Even though I will probably need to say goodbye to Samuel soon and experience the pain of loss, I know that it will only be temporary. Someday our family will be reunited with him for eternity, and that gives me hope.

We are choosing to enjoy as much time as we have, and we are grateful for each day Samuel is with us. Every kick and movement reminds me that, for the time being, he’s still safe and alive inside me. In the meantime, we are going to treasure every moment of his life, no matter how long it lasts!

Choosing Samuel’s Name

When I became pregnant with our first son Daniel, I remember the morning I took the home pregnancy test. I was excited but nervous, not wanting to take it too early and be disappointed if it was negative. So I prayed first and asked God to speak to me about this child (if I was pregnant!). I opened my Bible and read verses from the book of Daniel, and from that day on I had a feeling we would have a boy, and I was drawn to the name Daniel. We didn’t plan to announce his name until after he was born, and even though Bob liked the name all throughout my pregnancy, he waited to give his final stamp of approval until we were driving to the hospital just hours before Daniel was born.

Bob has a policy that he won’t even consider baby names until after we find out the baby’s gender. Choosing our child’s name is a significant decision, and I think the engineer side of him doesn’t want to waste time or effort. He figures it’s much more efficient to wait until we can automatically rule out at least half the name options!

In my family, we typically don’t announce a new baby’s name until right after they are born. But after my 20-week ultrasound and the Trisomy 18 diagnosis, we felt compelled to choose and announce his name right away since we don’t know how long we’ll have him with us, and we want people to be able to pray for our baby by name.

We have given our son the name Samuel David, meaning “God has heard” and “Beloved.”

Samuel: “God has heard”

The story of Samuel in 1 Samuel 1-2 resonates deeply with our hearts for this boy. Samuel was the one boy’s name I liked before finding out his gender (shh, don’t tell Bob I did a little preliminary baby name searching on my own!) After the ultrasound that revealed Samuel’s abnormalities, I was awake for hours in the middle of the night, weeping, praying, journaling, listening to worship songs and crying out to God. During that time I opened my Bible to 1 Samuel and read the first couple chapters.

In the story, Hannah is barren and cries out to God for a son, and she promises to give him to the Lord for all the days of his life. Miraculously, God answers Hannah’s prayer and she conceives, and — even more amazingly to me as a mother — Hannah keeps her promise. After weaning her son, she brings him to the temple, and he grows up in the presence of the Lord. I can’t even imagine what her mother’s heart experienced as she counted down her time with Samuel during those early months and years, bonding with her new son yet knowing he was not hers to keep. My eyes fell on several verses that left me in tears:

“As soon as the child is weaned I will bring him, so that he may appear in the presence of the Lord and dwell there forever.” (1 Samuel 1:22 ESV)

“For this child I prayed, and the Lord has granted me my petition that I made to Him. Therefore, I have lent him to the Lord. As long as he lives, he is lent to the Lord. And he worshiped the Lord there.” (1 Samuel 1:27-28 ESV)

We are continually praying for our son’s health and life. We know God is fully able to do a miracle and heal him completely if He chooses. But whether He does or not, we have dedicated Samuel to God. We know he is a gift of God for us to hold and cherish for possibly just a short time, and whenever that time ends we will release him to the presence of God. Since we chose his name, I’ve been playing worship songs and singing as I pray over Samuel. If the time comes that we need to send Samuel to grow up in the presence of God, I want him to feel right at home when he arrives!

David: “Beloved”

We decided to pass on Bob’s middle name as a gift to our son from his father. We love that David in the Bible was a worshiper, and a man after God’s own heart. 1 Samuel 16:7 says about David, “…Do not look on his appearance or on the height of his stature… for the Lord does not see as man sees: man looks on the outward appearance, but the Lord looks at the heart.” The doctors can tell us all the problems the ultrasound shows, but we know those physical issues do not define our son.

With this pregnancy, I’ve felt more cautious and less bonded with this baby. I have several friends who’ve had miscarriages or stillbirths, and somehow that felt like a more real possibility this time. Once we got the Trisomy 18 diagnosis, I knew it would be easy to try to protect my heart from caring too much, since chances are high that we will lose him. But I want to do the opposite, and even if I only have a few weeks left with Samuel or a few moments after he’s born, I asked God to give me a deep love for this baby. Bob and I want to pour out our love on Samuel in whatever time we have with him. We see him as created by God and deeply loved, and we wanted his middle name to reflect that.