One year ago today, I was told that my second son would not live. It was the worst day of my life.
Seven months and three days ago, my second son was born and lived in arms full of love for five hours, and then he died as I held him.
Life is one huge painful and beautiful mess. No matter how deep my darkness has become over the last seven months, (and trust me, it has reached inexplicable depths) I cannot regret having this son. I cannot regret Royce Quill. He was, and will always be, one of the three most beautiful gifts God has given me (along with his older brother and his father). It’s not because he survived until 40 weeks and 2 days. It’s not because he lived for five hours.
It’s because he is Royce Quill.
And sweet baby boy, in honor of the most horrible day of my life that ended with the most beautiful outcome – YOU – here are the speeches your daddy and I gave on the day of your funeral. No parent should have to attend their own child’s funeral, but I hope that one day your dad and I will sit down with you and read you our speeches, and you will know how much you are loved.
From Your Dad:
I am proud of my son, Royce. He lived. Beyond expectation, further than probable. He had no brain but I am convinced he still somehow made that choice. His life was not easy, but he chose to live it anyway. And when he knew it was over, he left.
What I want most with Royce is to have a relationship with him. I want to know what he is like, I want to teach him things and take him to do activities that he might enjoy. I want to watch him grow into a man that is his own person, someone that I invested in, and then watch what he does with that investment. I am not able to do that, but I did get to spend five hours with him before he died. When I see him again it will not be an introduction, rather it will be a reunion.
I’ve heard someone say that when you lose a baby you lose a part of your future. That is true, but only a small part of my future is gone; only 40-50 years. I do not get to spend the next 40-50 years getting to know him, and that is very sad for me. However, I get to spend everything after the next 40-50 years with my boy, at Jesus’ side. This is how grief and hope coexist. Grief for myself and my wife and our lack of relationship with Royce; and hope, not wishful thinking, but confidence in a relationship that is sure though not yet available.
From Your Mom:
I’ve been agonizing over what to say today. I don’t use the word “agonizing” lightly – I mean it’s truly been haunting me on an hourly basis ever since we chose the day for this service. As a bereaved mother, I am paralyzed with fear that I won’t say the right thing and my son will be forgotten or not valued. I feel the pressure to tell you all the things I’ve learned as I carried Quill through pregnancy, spent five hours with him alive on this Earth, and then held him in my arms as he died. I desperately want you all to know how much he means to me, how hard it is to live without him, and how amazing of a person he is. I don’t want him to be forgotten, and I don’t want him to be ignored just because he was a baby.
But then about two weeks before his service I realized that it’s impossible for me to write the perfect speech for today. Instead, I’m just going to tell you Quill’s story.
We found out that we were pregnant with our second son in October of 2016. It was terrifying because we still felt very alone in New Mexico, I still struggled with postpartum depression on a daily basis, and we were going to have two kids under two years old. But we were also overwhelmingly happy. We had wanted our kids to be really close in age, and we had wanted more than one child. We were scared, but more than that we were excited.
I spent an entire hour looking for the perfect “big brother” shirt for Finn to wear on our trip back home to Arizona in November so we could announce the pregnancy. Finn was wearing it when we got off the plane, and then again when we saw both sets of grandparents. The joyful reactions felt tangible – I started to feel like my head was rising above the murky waters of depression.
Grant and I hosted Christmas at our house in New Mexico. It was the first time we had ever hosted Christmas, and both sides of the family came to spend the holidays with us. I again felt my head rising above water…I had emotionally skipped Finn’s first Christmas because I was so sick, but now we were really celebrating, and the next year we would be celebrating with two kids.
The day of our 20 week ultrasound approached: February 9th. Two days before my birthday, and five days before Finn and I left for another trip back to Arizona. I got a sickening feeling that I was going to have to cancel that trip – I started to feel like something was going to go wrong at the ultrasound. When we arrived at the doctor’s office, there was a pregnant woman in the lobby crying. I knew at that exact moment that I would be in her position soon. I don’t know how I knew, but I knew.
And then the worst day of my entire life happened. The ultrasound began, and as soon as the technician found the head I could tell something was wrong. Something didn’t look right. She acted like everything was fine, but I could tell she was faking it. She left the room and said she needed to get a different ultrasound camera, which I knew was a lie. I went to the bathroom and got sick. When I came back to the room, we had to wait a very long time by ourselves. Finally the technician came back, this time with a doctor. The doctor told us very gently that our child had a severe birth defect that was “incompatible with life”. She said that he had nothing above his eyes – no brain, no skull.
Never in a million words could I make you all understand the depth of that pain. That diagnosis day was harder than anything I’ve ever experienced. Even harder than my son dying in my arms. To be told that the tiny, sweet, longed for child in your womb is broken and wounded, and that you will spend the next five months carrying him and desperately wanting him to live, only to end that time with death and heartache – I’ve never gone through anything worse.
I will skip over the darkness that covered our lives for the next five months, and shift my story now to tell you about this amazing child Royce Quill and all he conquered. We were given his fatal diagnosis on February 9th, and we also learned that day that he was a boy. We named him Royce Quill on the long drive back home that day. On March 6th we spent almost eight hours at a hospital in Albuquerque, meeting with five different specialists and learning that Quill’s defect was called anencephaly. We were devastated to learn that he also had a heart defect and an umbilical cord defect. Neither of these defects alone would necessarily be life limiting, although they both had the potential to be. We also learned that I had excessive amniotic fluid, which often results in an extremely painful pregnancy that prevents the baby from being carried full term.
So there we were, looking at four months remaining in our pregnancy. Four months to spend with the child that we desperately loved and wanted. Except that…now it probably won’t be four months. The umbilical cord defect meant that Quill might stop growing and die in utero, and the excessive amniotic fluid meant that I might not be able to carry Quill to 40 weeks. All of these defects and diagnoses together meant that mostly likely Quill would not be born alive.
Then Grant did the most selfless and caring thing I could imagine: he decided to give up our life in New Mexico, a life that he had always dreamed of, with a job that filled his heart and provided him true contentment. He decided to give it all up so that we could be with friends and family as we spent our limited time with Quill, and then as we mourned his loss.
I frequently hear people criticize the Bible’s definition of marriage, calling it archaic and demeaning towards women. But the Bible calls for husbands to live for their wives the way Jesus lived for the church. And Jesus died for the church. I can’t see that as demeaning towards women, no matter how I spin it. Grant died to his dreams for me. He gave up more than I can explain in order to care for me. That is not archaic. That is love.
We moved back to Phoenix a month before Quill was due, and right before we moved back we had another appointment in Albuquerque, where we received beautiful news. We learned that Quill’s heart defect was gone. We also learned that Quill was continuing to grow, which meant his umbilical cord defect wasn’t limiting him. We also learned that my amniotic fluid diagnosis, polyhydramnios, wasn’t excessive yet. We moved back to Phoenix with a small sliver of hope that we would carry Quill to term and that he would survive delivery.
We spent the next month living in God’s grace. Not that we don’t always live in God’s grace, but we felt it in ways we could never have imagined. Grant was unemployed, and people came out of the woodwork to help us – people gave us money, people gave us a place to live, people gave us groceries, people gave us meals, people helped us get health insurance, people helped us get counseling and find grief support groups. We spent the last month of Quill’s pregnancy together as a family, swimming, hanging out with friends and family, going to our church, sharing meals with our loved ones, and soaking up every second we got with Quill.
Then the morning of July 5th, at 40 weeks and 1 day into the pregnancy, my water broke. This was a significant occurrence for three reasons: first, we truly hadn’t expect Quill to live this long in utero. Second, it was the exact same point that my water broke with Finn: at 40 weeks and 1 day. I felt so proud of my boys for being schedule loving kids, just like their mom. And third, it was significant because many babies with anencephaly do not survive birth if their water breaks before labor begins. So I was overjoyed that Quill had lived so long and that he had Finn’s timing…but I was crushed that he would likely not survive delivery without water to cushion his fragile head.
One we got to the hospital, we discovered something amazing: my water had broken at the top of the amniotic sac, which meant it was still sealed at the bottom, which meant Quill still had water to cushion his head. For the next 24 hours the nurses frequently checked his heartbeat…and it stayed steady and strong almost every time they checked it. He continued to live through a long labor, just as he had continued to live throughout the entire pregnancy, despite all the negative diagnoses.
Then at 6:51am on July 6th Royce Quill Goss made his arrival. He was born in silence and placed on my chest in silence. My first sentence was a feeble and desperate question: “Is he alive?” Nobody answered me at first. Quill could not control his limbs and did not cry, so I couldn’t tell if he was alive. And then after what felt like a million years, somebody…I don’t even know who…confirmed it: he was alive. Waves and waves of joy and relief washed over me. The edges of the world faded away. There were people in the room: family crying, doctors and nurses operating and monitoring, assistants helping…but I acknowledged none of it. I just looked at Quill, and I was amazed: he looked like Finn. I had been terrified that all I would see was his lack of skull, the open wound at the top of his head, the characteristic huge eyes that all anencephaly babies have. I did see all of those things, because they were a part of him. But I also saw a face that looked so much like Finn’s did when he was born. I saw a baby who looked like Grant and Jamie Goss’s baby. I saw Royce Quill, and I loved him.
The next five hours were indescribable. Never, never, never in my life have I felt the joy that Quill brought into my life. He had defied all the odds: three birth defects, polyhydramnios, water breaking early, and a long labor that involved all sorts of induction methods. He flipped a tiny little baby middle finger at the brokenness that Satan threw at him, and instead lived through it all and then spent five hours alive, surrounded by people who desperately loved him down to the center of their bones.
I think that people might assume we weren’t sad during those five hours. When I say that those five hours were filled to the brim and overflowing with joy, I mean it. When I say that those five hours were the closest I will get to heaven on this broken earth, I mean it. But we were also crushed. Nothing can communicate the pain of seeing your child die, regardless of their age. It was breathtaking in the worst way possible.
Quill died in my arms, right after he pooped and his father swaddled him. He was as comfortable as is possible on this earth: he relieved himself, he was swaddled comfortably by his father (who is a master swaddler), and he was being held by his mother.
Quill lived a life more beautiful than most of us could ever dream of. I will forever, forever wish that I still had him in my life. As I watch Finn grow older and see him ride a bike, go to school, learn to drive, make friends, train a dog, find a career, and maybe get married and have kids…I will be stabbed with the thought that I don’t get any of that with Quill.
But I got Quill. And I got all the beautiful lessons that God taught me through Quill’s life. We would not look at the death of a 20 year old and the death of a 60 year old and the death of a 90 year old and say that the 20 year old’s life had any less meaning. And so I look at Quill’s life of five hours and say that it has no less meaning. I look at my friends who have had stillborns or whose babies lived for a few months, and I say their lives have no less meaning.
We parents who have been given these children who are stillborn or die shortly after they are born are given a burden to carry for the rest of our lives as we grieve our losses. But we are also given a beautiful gift in these tiny packages. These small children give a depth and color to our lives that can’t be read in a book or taught in a lesson.
And that will be the rest of my life: sorrow and joy, all wrapped up in a confusing but beautiful life. I will never again be able to put my sorrow in a box and my joy in another, keeping them neatly separated. And my life is better for it. My life is better for having Quill. I did not get a lifetime with my son, but I got my son. And you can bet your ass I will forever be grateful for that.