Samuel’s Eulogy

I want to share the eulogy I wrote for the program at Samuel’s memorial service. What I ended up writing was more like a summary of his time with us. As I looked back at my calendar for the months of my pregnancy, I realized Samuel had done a lot in his brief life! I asked our friend Dayle who works at the church office to let me know if I needed to shorten it to fit in the program. Instead, she redesigned the program, adding an extra page so we wouldn’t have to leave out a single detail! 🙂

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Samuel David Kniley

Samuel David Kniley was born on January 24, 2017 at 2:22 a.m. and passed away on January 25, 2017 at 4:30 p.m. His family was blessed with his sweet presence for nine special months during pregnancy and 38 beautiful hours after birth, before he was peacefully ushered into heaven while in the loving arms of his parents.

Samuel’s life was brief, but rich. Knowing his life might be short made every moment that much more precious for his family.

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Life on the Inside: 9 Months

The news of this pregnancy came as a special Mother’s Day gift for Joanna, and an eagerly-awaited surprise for her and Bob. While safe inside the womb, Samuel got to join his big brother Daniel for lots of fun events: they visited a local farm and The Strong Museum of Play, had numerous playdates with Daniel’s friends and cousins, played at the beach, hiked at Letchworth, and took a safari ride at a wildlife park.

Samuel was there on a Sunday in June when his brother Daniel was dedicated at church, although no one knew his parents were secretly dedicating him too! Samuel had an epic summer: he attended his first baseball game and first wedding, took road trips to Pennsylvania and Baltimore, celebrated CT’s 10th anniversary, and made an international trip to China! He stayed at the Golisano Children’s hospital for four days in August when his brother was diagnosed with diabetes. That hospital became an important place for the Kniley family and their boys within the span of six months.

He celebrated the birthdays of his mom, dad and two-year-old brother. During the fall, Samuel attended his Great Grandpa Kniley’s funeral.  He helped vote in his first presidential election. He experienced his first Rochester winter, and joined extended family to celebrate his first Thanksgiving and Christmas. He even rang in his first New Year!

He spent most of his life going everywhere his mom went ;-): grocery shopping, D-group, church nursery, small group, baby showers, library, dentist, chiropractor, Aunt Gen’s hair studio, sisters brunches, farmers markets and family dinners. Samuel was the main topic at countless prenatal appointments and he made his appearance in multiple ultrasounds!

His favorite times of the day were listening to worship music while his mom cooked dinner, hearing his daddy’s voice when he came home from work, playing and getting “smooshed” by his big brother, and snuggling with his mom and brother in the rocking chair at bedtime.

Samuel joined his daddy at CT training events, sat outside while he worked in the garden, and he got to be there for the launch of his dad’s wedding photography business. He joined his dad for a special trip to Gettysburg with four generations of Kniley men. Samuel liked to tag along with both his parents on their weekly date nights and even a fall weekend getaway in Ithaca!

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Life on the Outside: 38 Hours

Samuel was welcomed into this world with exclamations of joy and relief! For 38 hours he was surrounded by his loving family and given the best of care by the fantastic NICU team at Golisano Children’s Hospital. Against all odds and hospital visitor policies, he lived long enough to meet all of his aunts, uncles, and grandparents! He was loved, held and cherished by his mother, father, and brother.

As his brother Daniel summarized so well, now baby Samuel is “all done breathing” and “all done crying.” Samuel gets to grow up in Heaven now, with no more breathing tubes, no more tears, and no more Trisomy 18. He is finally free and healed! With his new perfect body he can grow up and learn to walk, talk, run and play, in the presence of God for eternity! His family will always remember him and miss him with all of their hearts until the day they are finally reunited again. Samuel was one of the greatest gifts his family has ever been given.

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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.

Week 33 – Our (Not So) Normal Life

If you could see our family calendar this week, you’d get a glimpse of what this season is like for us. It’s bizarre to be simultaneously planning our baby’s birth and death while carrying on with the ordinary things of life.

One day I have an ultrasound, the next a hair appointment. Tuesday we met a new pediatrician for Samuel, Friday we meet the funeral director. I have a dentist appointment, Daniel has a diabetes appointment. I contact our doula, Bob calls the funeral home. Last week Bob and I spent our date night picking out paint colors, this week we spent it writing our birth plans. We now have a seven-page document spanning every scenario from stillbirth to live birth to Samuel passing away in the hospital sometime after birth, and still I don’t feel prepared. How can we ever really be ready? I never felt prepared to have our first baby, but I sure don’t feel ready to lose our second one.

Thanksgiving Day marked exactly 12 weeks from the day of the ultrasound that changed everything. As I told my family later, I think it was my favorite Thanksgiving yet. Something about this season, with the looming sadness, has made other parts of life feel even sweeter. There’s a lot I don’t take for granted anymore. I feel so thankful to still have my two boys alive and well. I’m amazed Samuel has stayed with us this long. After the initial diagnosis, I expected to lose him any week. I worried anytime I went a couple hours without feeling him move. Three months later, he’s kicking more than ever, and life almost feels normal. Almost.

I smile whenever strangers congratulate my pregnant belly. It used to feel awkward; now it’s kind of nice that at a glance we just look like a happy family with a cute two-year-old and another one on the way. It’s less complicated than trying to explain to strangers in the grocery aisle that, Yes I’m expecting another boy, but No, I’m not so excited for how close our boys will be growing up, because I’m not sure one of them will get to grow up.

At first after Samuel’s diagnosis, we prepared our hearts for loss. A stillbirth seemed likely, and we knew it would be a blessing if we even got to hold Samuel for a few moments alive after his birth. As the weeks carried on, we found stories of the T18 kids who survive longer, and our thoughts shifted from death to life: what if he makes it? Not just a few hours or days, but weeks, months or even years? We started exploring what it looks like to bring home an infant on a ventilator and feeding tube. What surgeries Samuel might need, what medical interventions it might take to prolong his life.

After my ultrasound this week, we are starting to feel like loss is more inevitable. They saw a couple new issues with Samuel: they spotted a mass in his lungs that could make breathing even more of a problem, but potentially make intubation less possible. There is a problem with his umbilical cord that could mean he’s not receiving all the nutrients he needs, and he could stop growing and thriving in the womb. It looks like his growth is starting to plateau when now’s the time he should be growing more than ever.

We’ve been praying God would take the hard decisions away from us, that we won’t have to make life and death decisions for Samuel. Or that if we do have to make decisions, it would be so obvious and clear which way to choose, and we’d feel His peace for every step. In some ways, these new problems could help narrow down our options for what is even possible for Samuel. We know ultimately heaven will be the best place for him, where he can be completely free and healed and whole, and so happy in God’s presence. We just don’t want to have any regrets that we could have done more for Samuel in his time with us. Please keep praying that God would lead us so clearly along the way in each step we should take. Thanks for caring about us and being part of our not quite normal life. 🙂

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.

Ask and Keep on Asking

Unlike my pregnancy with Daniel, I didn’t have any strong sense about this child: no name ideas or special Bible verses, no strong sense of the baby’s gender — although I was mistakenly guessing it was a girl! I figured it was mostly because I have less quiet moments to even think about the baby. My life is a lot busier and noisier with a toddler around, and I joked that this baby was like a typical second child, already getting “lost in the shuffle!”

In contrast with my first pregnancy, I did not download a pregnancy app or spend hours reading about my pregnancy each week to track whether my baby was now the size of a lentil or kumquat. Most of the time I could hardly remember what week of pregnancy I was at! We hadn’t even gotten around to making any official public baby announcement, not because we were trying to keep it private, but mainly because our summer was so non-stop crazy with traveling overseas, Bob’s busiest season at work, and then landing in the hospital with Daniel and learning to manage his new Type 1 Diabetes diagnosis.

Two weeks before the 20-week ultrasound, I was driving home from grocery shopping and during those quiet moments alone in the car, I asked God for His thoughts about this baby. I had these words from Matthew 7:7 come to mind (in the Amplified version): “Ask (and keep on asking)… seek (and keep on seeking)… knock (and keep on knocking)…” I had a sense that with this child we were going to need to learn about perseverance in prayer. Immediately after that, I felt wave of peace wash over me, and I sensed that God wants to give us peace in the midst of relentless prayer.

In light of the Trisomy 18 diagnosis, I am clinging to this verse and putting it into practice. I will keep asking and praying for this little boy; I know God is able to intervene and heal him completely. If God gives you faith to believe for that, please, please pray with all your heart! But I also trust God’s goodness no matter the outcome. Whether He heals our son or not, God is deepening my prayer life and probably many of yours as well. I know my faith and trust is growing as I draw close to Him.

Thank you for standing with our family in this season. We feel the prayers and love of so many people surrounding us, and God’s grace sustaining us. We are so grateful to have our family and friends, and even strangers standing with us. It means so much to know we don’t have to walk this journey alone!