Our Angel Watch story

The founder of Angel Watch, Carolyn Kasteler, is putting together a collection of Angel Watch stories. Angel Watch was and is such a huge blessing to our family, so I was happy to contribute. Here is what I shared with Carolyn.

 

I am not sure I could ever really put into words how important Angel Watch is to our family's story. Your support and guidance during the hardest thing we've ever had to go through changed our lives in very significant ways. What a blessing it is to us to not only be able to remember Daniel and cherish his memory, but also to be able to celebrate him. I believe Angel Watch is the reason we were able to get through that difficult time as well as we did, and that we've been able to connect with others who have gone through or will go through similar things. 

Daniel was a long-hoped-for, long-prayed-for baby. His older brother, Charlie, too. It took David and me five long years trying to conceive before we were finally blessed with Charlie, who just turned 15. When Charlie was about a year old, we decided we'd start trying again, knowing it might take a while again. 

When we faced unexplained infertility again, we reached out to our doctors—again. This time, the medical procedure that seemed to have helped us to finally conceive our first, didn't do the trick the second time around. With some additional medical help, we conceived again, only to lose that pregnancy very early on. A few months later, we worked up the courage to try again, and I became pregnant with Daniel. 

Daniel's pregnancy was stressful from the start. At one of my first OB appointments, they measured my progesterone, which came back at 0.9, about 1/10 the level it should be for a healthy pregnancy. I was told I was probably miscarrying, but that I could take progesterone to try to save the pregnancy. 

I faithfully took the progesterone every day through week 14, even though it made me even sicker than I already was. It was a relief to be able to stop taking it, but also a little scary as I knew it had saved my pregnancy. As stressful as the pregnancy was, I do remember feeling that, finally, everything was right with my life. We were finally having another baby, so Charlie would have a sibling. Even though we wanted more children, if it didn't happen again, it would be okay because at least they'd have each other. I remember feeling like life was perfect, followed by a bit of a foreboding feeling that said, "Wait... maybe things are a little too perfect."

At my first ultrasound, around 9 weeks, I remember the woman performing the ultrasound mentioning that Daniel had no arm or leg buds, but nobody made a big deal about it. I remember he looked like a perfect little bean. We weren't worried. 

A few weeks later, it was time for another ultrasound. The night before the ultrasound, Dave and I were excitedly anticipating the news the next day would bring. It was my turn to say our nightly prayer. I remember wanting to ask God for everything to go well at the ultrasound in the morning, but I couldn't say the words. I felt physically restrained from being able to ask for that. It didn't make me feel worried. The feeling was accompanied by a sense of comfort, and I didn't feel alarmed, but I did take notice. 

The next morning at our appointment, I could tell almost from the start that there was something wrong, due to our ultrasound tech's demeanor. She was usually very cheerful, but she wasn't this time. My untrained eye couldn't see what the problems were, but I did notice that as she measured, numbers like "13" and "15" were popping up, instead of the expected "19," indicating that his measurements were weeks behind. She got the gender announcement out of the way as soon as she could. 

I still remember Charlie's sweet little 4-year-old voice asking, "Is it a brother?"

It was a brother. Just what he wanted and had been waiting for. 

As soon as she wrapped up her measurements, she set the equipment down and said, "I've got to be honest, you guys, I have some concerns." 

She told us that she could see that the baby had some kind of dwarfism, and she guided us to a room where we could wait to see the doctor, away from other patients in the waiting room. 

I remember sitting in that room with all three of my boys—David, Charlie, and Daniel in my belly. We were a little in shock, of course, but I wouldn't say I felt worried or sad. Just adjusting to the news that we were going to have a little person in our family. I knew it would be different and there would be things to learn, but I wasn't sad about it. 

When Dr. Hughes joined us, he explained to us that there were hundreds of types of dwarfism and that a handful of those types were lethal. I had never known that before, but I still felt fine about it all. With hundreds of types, what were the chances ours would be one of the bad ones? 

The nurse made us an appointment for the next day at McKay-Dee's Maternal-Fetal Medicine office. 

At home that night, I remember a moment standing alone in my kitchen, and everything felt different. I was in this very familiar place in my home, but somehow all of my surroundings looked and felt unfamiliar. I knew that my life had just changed—big. 

That night, I searched the internet and read everything I could about dwarfism and it's prenatal diagnosis. I learned more than I ever had before about achondroplasia, osteogenesis imperfecta, and a handful of other types of dwarfism. I briefly read about one called thanatophoric dysplasia, and I learned that when a baby with dwarfism had a "cloverleaf" skull, that only went with thanatophoric dysplasia, type 2, a lethal condition. 

At our ultrasound the next day with a new tech and a new doctor, I remember how kind the tech was with us. Very friendly and talkative and doing her best to help us feel comfortable. As she measured our baby, I heard her say the words "cloverleaf skull." That was the first moment I felt any fear. A few minutes later we were joined by a genetic counselor who kindly suggested that it would be best for my own health to deliver the baby as soon as possible. She explained to us that we would need to make our decision before 24 weeks, after which it would be illegal to deliver early because of abortion laws. 

David and I were given time in a different room to come to terms with the news before the doctor came to talk with us. We were totally heartbroken and confused. It had all happened so quickly. In hindsight, I can see that there were clues along the way, but we didn't see them that way at the time. 

Dr. Andres joined us and talked through some of our options with us. We could deliver within the next few weeks or we could decide to carry the baby. He talked to us about potential complications and about testing they could do to verify the diagnosis (even though, with the cloverleaf skull, there was little question). 

I felt very comfortable with Dr. Andres and grateful for his ability to be straightforward about our situation while still showing a lot of concern and kindness. I later learned that his straightforwardness felt abrasive to David. I think this was the first moment that we started experiencing things differently. 

David and I quickly decided that we did not want to deliver early and that I would carry the baby as long as I could. We wanted as much time with him as we could have, and David wasn't ready to accept the diagnosis and didn't want to end the pregnancy prematurely if there was any chance that Daniel could be okay. It became very difficult for us to talk about any of it because we felt very differently about it. He felt like we should hold out hope for a miracle and that the diagnosis would be wrong and that Daniel would be healthy. But I didn't feel it. I wondered if  there was something wrong with me and if I was lacking faith. 

Because of these differences in how we felt about the situation, we struggled to talk about it, which we needed to be able to do. 

We had received a flyer for Angel Watch, and I knew that talking to them would probably be good for us, but I couldn't pick up the phone and call. It was scary to invite strangers to come talk to us about this situation that was so raw and difficult. I told people I would call, but I didn't. My mom encouraged me to call. Our medical team encouraged us to call. I said I would, but I never did. Finally, one of my nurses or a social worker (I can't remember who it was—maybe Amelia) asked me if she could give Angel Watch my phone number, and I said yes. 

I think it was Kay who reached out and made an appointment to come visit with us in our home. A few days later, she and Suzie came. All of my hesitation evaporated when they came, because there was an immediate sense of their love and care for us, even though they didn't know us. They didn't know us, but they knew what we were going through very well, and they knew just what to say. They were so very sensitive, kind and wise. They helped us break down the barriers between the two of us and be able to discuss our situation and make the necessary plans. 

I remember Kay telling us that this situation would make us different, and that as a couple, it could either push us apart or draw us closer to each other, and that we got to choose. She was the person who introduced to us the phrase "You can do hard things." 

Suzie was always so gentle in her demeanor. She spoke so softly and tenderly and always expressed her willingness to help us in any way she could. 

I think our meetings were weekly, and Kay and Suzie quickly became dear friends. When the time for delivery neared, they scheduled a meeting with our hospital team so that we could all have clear expectations and so that the hospital experience could be as good as possible. Suzie made sure she would be scheduled to work on the day of my delivery so she could be there with us. 

The day of Daniel's birth was so special. So hard, but so beautiful, too. The c-section took longer than anticipated and there were some complications because he was so big. There were a few moments I was a little afraid I wasn't going to be okay. But everyone stayed calm and supportive and everything was okay. After Daniel was cleaned up a little, he was wrapped up and brought to me so I could be with him while they finished the surgery. 

One very special moment in the OR was when Suzie came to me and looked me right in the eyes and said, "You are a very special mother." I'll never forget the love she had for us and for Daniel. 

Angel Watch continued to support us in the weeks following Daniel's birth. I remember Suzie coming over to deliver our precious bear made from Daniel's hospital blankets. We cherish that bear and still use it in our family pictures and pass it around at Christmas time to include Daniel in our family time. 

Over the years we have had the opportunity to connect with other Angel Watch families. Soon after Daniel's birth, I was put in touch with other mothers of babies with thanatophoric dysplasia, and even though I felt so awkward when we first met (I was only a few weeks out from my loss and not feeling at all socially normal), those women became dear friends. 

We have always enjoyed attending the yearly Angel Watch remembrance ceremonies. It's so wonderful to gather with other families who have had similar experience. My heart breaks every year to see the new Angel Watch families whose pain is still so raw. I hope that being together gives them hope that they can find their way through this new reality they never wanted. But no matter where anyone is on their path through this experience of loss, there is always one thing that everyone has in common, and that is the reverence and love that we all have for Angel Watch. I truly do not know if we could have made it through that experience in such a positive way without Angel Watch. 

We needed you, and you were there. I wish every family that faces this kind of loss could have what we had. I'll never forget it and I'll never take for granted how much you helped us and I will take any opportunity to care for other families and mothers the way we were cared for. 

Thank you. 

With love,

The Millers

Emily, David, Charlie, Sammy, Ada, and angels Daniel (5/10/11) and Aaron (5/22/20)

Today was going to be your birthday

 Dear baby Aaron, 

I'm writing to you today on what we thought would be your birthday. We thought we'd get to hold you and love you today. We thought you'd get to meet your big brothers and sister today. We thought we'd be spending the day in a quiet hospital room, gazing on your perfect baby face. 

I miss you. I'm glad you were as active as you were while you were here so I could feel you for a while. We don't know why you had to go. Your little body was perfect. Your little lips looked like ours. You looked like your brothers and your sister. 

We wish you were here with us today. Bringing you home would have been such a bright spot in this dark year. You are cherished and loved, even in your absence. I hope I will be able to feel your spirit close from time to time. I hope that, wherever you and your big brother Daniel are, that it is beautiful and you are happy and that you feel the love we have for you. 

Your mama loves you. 

8 years

It was 8 years ago today when we went to our big ultrasound with Daniel. I can still remember it like it was yesterday.

I remember the sonographer being less light-hearted than usual. I remember her setting down her instruments and saying, “I’ve got to be honest, you guys, I have some concerns.”

I remember Charlie asking, in the sweetest 4-year-old voice, “Is it a brother?”

I remember waiting to see the doctor and feeling overcome with peace. Not knowing what we were dealing with yet, but knowing we could handle whatever we had to.

I remember the doctor telling us that there were hundreds of types of dwarfism, but that some of them were lethal and we’d need to follow up with the maternal-fetal medicine office at the hospital. I remember how my doctor’s office went way out of their way to get us an appointment the very next day.

I remember coming home that night and standing alone in my kitchen. Looking around and feeling like everything looked different somehow. Like my whole world just changed.

Everybody goes through really hard things at some point in their lives. I know that. This was our big one, so far. It’s hard to believe it was 8 whole years ago, but it also seems like another lifetime ago.

The months that followed were so hard, but also so special. Months of prayers, tests, and lots of phone calls and texts from the people who loved us.

I remember looking down at my big belly, watching him wiggle around like any other baby, and pleading with him to, “Please just be okay, baby.”

I sure love and miss him. ❤️

Coming closer to Christ

This week, my cousin Traci contacted me asking if she could share something about our experience with Daniel in the lesson she was preparing for church. The topic was about having a personal relationship with Jesus Christ, so she asked if I would share how having Daniel helped us to know Christ. This is what I wrote for her. Some of it has been shared here before, but not all of it.

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Four years ago, I was pregnant with our second child, Daniel. We had waited and prayed for him for several years and we were so happy he was finally coming.

The night before our big ultrasound, my husband and I were praying together. During the prayer, I wanted to ask, "Please bless us that the ultrasound will go well and that our baby will be healthy." As I tried to say those words, I was stopped. They wouldn't come out. But, for some reason, I wasn't alarmed. I felt peace.

The next day, at our ultrasound, the usually cheerful and talkative sonographer was quiet and seemed a little anxious. She got the gender reveal out of the way almost right away. Our older boy, Charlie, sounded so sweet as he asked, "Is it a brother?" It was a brother, and we were all so excited.

Eventually, the tech put her things down. I can remember it as clearly as if it had happened yesterday. She said to us, "I've got to be honest. I have some concerns." She told us that his bones were short and there was some concern about the shape of his head, and that he appeared to be a dwarf. She led us to a room to wait for the doctor.

We were reeling, but I still felt peaceful. This was unexpected, but we could do this! We knew we would have to be prepared and learn a lot, but this was okay.

When the doctor came, he confirmed to us that our baby appeared to have some type of dwarfism. He told us that some types of dwarfism are fatal, but there are many types of dwarfism that aren't.

They scheduled us to see specialists the next day. At this followup appointment, everything changed when we learned that our son showed all the signs of having one of the lethal types.

We were devastated. We were told that if I chose to continue the pregnancy, I would very likely go to full term. They told us the baby was fine as long as I was pregnant, but as soon as he was born and needed to breathe on his own, his lungs wouldn't be able to do the job. He might live for a few hours, if we were lucky.

I felt like I must be the only mother to ever get that kind of news. That I could carry him for four more months and he would be fine during that time, but that he wouldn't survive outside of me.

We were heartbroken. My parents came to be with us for that weekend, and continued to come whenever they could for the rest of the pregnancy. Sometimes my mom came every weekend.

I had a sweet and wonderful visiting teacher who was very brave for me during this time. She called just when I needed her, and was always just pushy enough to convince me to let her help me. One day, she called and could tell I was having a rough day. She canceled her plans for the day and enlisted a friend to come with her to do my grocery shopping and clean my kitchen. She cheered me up in a big way that day. Throughout the rest of my pregnancy, she frequently made dinner for my family. One week, she cooked for us five nights in a row. Her service to us was so touching to me, and she was such a blessing to us. She was caring for us during our hardest time, just as our Savior needed her to.

One Sunday, my mom and I were sitting in Relief Society together. I don't remember if this came directly from the lesson or if it was just an impression that I had during the meeting, but I realized that although I couldn't do anything about my baby's diagnosis and I couldn't save his life, that I could give my will to the Lord. I could trust Him completely and know that Daniel had a special purpose and that we would be okay.

The closing hymn that day was "Come, Come, Ye Saints." I cried as we sang the words:

And should we die before our journey's through,
Happy day! All is well!
We then are free from toil and sorrow, too;
With the just we shall dwell!

In the midst of my sadness, it was so comforting for me to consider what an incredible blessing it was that my child couldn't be touched by the sorrows or temptations of this world. He was pure and he would always be pure. He would never be mistreated, only loved.

Whenever I need reassurance that my Savior knows me and loves me, I think on that prayer, the night before my ultrasound. All I wanted was to ask that everything would be normal and okay, but I couldn't speak the words. But I know, without a doubt, that it's because God was aware and in control. And I know it because of the peace that was given throughout my pregnancy. I know it because our burdens truly were made lighter by loved ones on the Lord's errand. I know it because we could feel the prayers of others helping us to be okay.

During the four more months of pregnancy after we got the news, we did everything we could to make memories with Daniel while he was still physically with us. It was a difficult but very special time for our family.

Daniel lived for 32 minutes. During and after his birth we had some very special and sacred experiences that further confirmed to us that our Savior was aware and loved us.

Being his parents has been such a blessing. Four years later, we are still learning all the time what an impact his life has had on others, and huge blessings that have come from that. I am so thankful that I get to be his mother, and I look forward to the day that I will hold him again.

Angel Watch segment on CBS Channel 2, Salt Lake

We were interviewed a couple weeks ago for this story on Salt Lakes CBS station. It was a really special experience, and I'm honored that we got to share a little of Daniel's story and tell people what a wonderful organization Angel Watch is.

Angel Watch, Baby Your Baby Segment on Salt Lake CBS Channel 2

Angel Watch

Danny Boy

You know the song "Danny Boy"? That is one of our favorite, special songs. It was a song that David's LDS mission president used to sing, and he really admired his mission president (he died unexpectedly a few years ago). And, of course, it reminds us of Daniel. Not just because of the name, but because the song is about missing someone because of death.

Anyway, Dave and I were invited to be interviewed for a story about Angel Watch for the CBS station in Salt Lake. Channel 2. They wanted to do a story about Angel Watch for their Baby Your Baby segment, and they wanted to interview a couple who had been served by Angel Watch. The Angel Watch director invited us to do it. We have a history with her, because before she was the Angel Watch director, she was our social worker at the hospital when Daniel was born.

As we left the office after the interview, there was a choir singing "Danny Boy" in the hospital foyer. I got chills all over my body. It was their last song, so I found the director and told her about it. She said it was from their fall concert and that they hadn't been singing it very much, but decided to add it at the last minute.

It didn't feel like a coincidence. 

Remembering

Daniel is on my mind tonight. He's on my mind a lot, but extra tonight. I think it is because tonight I read a post on the Thanatophoric Dysplasia Facebook group page about a baby boy who lived with TD with only oxygen support for seven months. He was a really beautiful little baby, too. My Sammy (my rainbow) will be seven months in a couple weeks. It made me very emotional to put myself in this other mother's place, imagining getting to know my son for seven months before having to say goodbye. How difficult that must have been.

I got to thinking about that day in the hospital when Daniel was born. The hospital staff was so good to us. They were very patient with us and they let us hold him and admire him as long as we wanted. I remember gazing down on his sweet little face. He didn't look like other babies. But the more I looked at him, the more perfect and beautiful he was to me. It was as if the disorder melted away and I could just see HIM. I could see how he looked like his big brother. I could see how he looked like Dave and me. And there is no doubt in my mind that his spirit was there with us, even though it had left his little body.

I never felt ready to part with him. How could I? How can a mother ever be ready to physically let go of her child, knowing she would never hold him, ever again? I would never feel his cheek on mine again. Never kiss him on the forehead again. Eventually, I realized I would never feel ready.

When the man from the funeral home came (at our hesitant invitation), it was time. I don't even know what to write about that time, because it was just so hard. For me, I think it was the most intensely painful moment of our whole experience with Daniel, and of my whole life thus far. And anytime I think about it, that pain comes right back. I couldn't give my baby to anyone but David. I asked him if I could please give Daniel to him, and for him to give Daniel to the man from the funeral home. The man was very reverent about it and very patient and kind. He had a good spirit, which had to be the case or I couldn't have done it. I lifted Daniel into David's arms and watched him walk over and place our baby in this man's arms. As he left our room, I put my face in my hands and shook my head back and forth, trying to deal with how badly it hurt to let Daniel go. I had never been so sad in my life. 

Our room was our sanctuary for those next few days in the hospital. We kept the TV off and kept it very quiet and peaceful in our room. It felt like a very safe and special place to be. I believe we were comforted by the prayers from our loved ones, and that Daniel himself was there keeping us company. I know it.

All I have to give

I wanted to give you something special. Something I treasured that could stay with you until we meet again.

But there was no thing precious enough to send with you. You were what I cherished. You were what was hard to let go of. How could I give you a gift that had no bearing on my heart?

On the day you were buried, the last day we saw your sweet face, I still had no gift for you. I had tried, but nothing was close enough to my heart to represent my love for you.

There you were, wrapped in the pretty blue blanket your Grandma made for you, snug in the little white sleeper she helped us choose for you.

You looked peaceful. I didn't want to say goodbye again. On the day you were born, the moment we handed over your precious little body was the hardest moment I had ever had to bear.

I looked upon your sweet little face for the last time. I leaned over to kiss your forehead one more time before your tiny casket would be closed. My tears landed on your cheek and in the fibers of your little hat.

There you go, my sweet boy. All I have is my love and these tears. My tears will stay with you and so will all my love for all of my days. 

Empty arms

I have been e-mailing back and forth with another mom who just lost her sweet little baby girl. Our conversation reminded me of something so sweet that David did for me, that I never want to forget.

It was probably about six days after Daniel was born. I woke up that night and couldn't go back to sleep. I missed Daniel so badly, and my arms were aching to hold him. There was a very real physical need to hold my baby, but it couldn't be met. I must have explained that somehow to Dave.

Dave got up and found Daniel's hospital blankets. He rolled them up to feel like a swaddled baby and he brought them to me. It was just what I needed. I was still very sad, but hugging his blankets did give me comfort that night. I'm thankful that Dave knew just what to do. Nothing could have helped me more that night.

My mom is amazing

It's true. My mom is amazing. I'll tell you why.

During my pregnancy with Daniel, after we learned about his skeletal dysplasia, we were put in contact with an organization called Angel Watch. They are a perinatal hospice organization, and they were such a blessing to us during such a hard time.

I'm generally a pretty open person, but this was such a hard thing for David and me to go through that it was hard to feel like we could let someone into it - especially someone we didn't know. But I knew that, even though it was hard, I would appreciate what they had to offer. I just couldn't pick up the phone and make the call myself.

When Kay from Angel Watch called me (our genetic counselor asked if Angel Watch could contact us and we said they could), we scheduled a time that she and Suzie, a labor and delivery nurse who was also an Angel Watch counselor, could come meet with us.

It didn't take long to feel comfortable with Kay and Suzie. They spoke softly and were very sensitive to our situation. They helped Dave and me talk about the hard things that we had already had a hard time talking about. Over the next few months they continued to visit and they helped us make the hard choices that come with a baby's poor prognosis.

During one of those meetings, Kay told us about the origins of Angel Watch, and how it had started as a segment of a hospice that either she or her founding partner Carolyn (or maybe both) had worked for. Carolyn had also lost a baby, which was what led her to start the program.

When Kay told me about it, a light bulb came on in my head. My mom was also a hospice nurse and administrator. The thought occurred to me that maybe my mom could become involved and help the families in my hometown who are going through the imminent loss of a baby.

I knew I couldn't just tell her, "Hey, Mom! You should take on this enormous project and get this started at home, too." It's too big a deal to ask someone to do something like that. But I did tell her what Kay had told me, and she had the same idea.

So over that last year and a half, my mom has been very busy getting it going in my hometown. She and the others involved in getting it started decided to name it Daniel's Gift, after my little Daniel. It's so special to me to know that, because of the painful experience that my family went through losing Daniel, families from my hometown who are faced with similar situations will have the invaluable support that we had here.

My mom always has something in the works for Daniel's Gift now. She's always looking for opportunities to spread the word that they are available, looking for service projects for Daniel's Gift families to participate in to honor their babies, etc. And Daniel's Gift is for families who have already been through the loss of a baby, too, even if their loss was a long time ago or they didn't participate with Daniel's Gift during pregnancy for whatever reason. It's a group of people who can support and uplift each other during and after this kind of loss.

It's wonderful to me that my mom would put so much of her effort and her heart into something for my sweet little boy. See, I told you. She's amazing.

Daniel's Gift brochure

It's been a year

Originally posted on my other blog January 6, 2012.

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2011 was one for the books, for sure. A big year for our family.

It was one year ago today that we learned that Daniel probably had dwarfism. I was 19-weeks pregnant and we were all excited to learn if the baby was a boy or a girl. We brought Charlie with us to the appointment so we could all find out together. I'll never forget how he sweetly asked, "Is it a brother?" as soon as we got a peek at the baby.

It actually feels like much longer than one year ago, even though it's still pretty fresh in my mind. On the screen I could see numbers like "15" and "14," but until the ultrasound was over, I didn't realize that there was cause for concern. We should have been expecting those numbers to say "19," indicating normal growth.

It was the next day that our maternal-fetal specialists confirmed the dwarfism and suggested it might be a lethal condition. I remember feeling like I was the only mother who had ever learned, mid-pregnancy, that her baby was probably going to die, but that he would be fine as long as I was pregnant. How was I going to do it?

But I did it. It has been almost 8 months now since Daniel was born. It was a monumental year. The birth and death of our baby. Our 10th wedding anniversary. My 30th birthday.

I am not usually sentimental about a new year, but I was this year. On one hand, I was anxious to start a new, hopefully easier year. On the other, I was hesitant to let this one come to a close. It was Daniel's year, and starting a new year kind of felt like closing another chapter.

But I do feel like I have a fresh start with this new year. I feel like it's a whole new decade for me. My thirties, and double-digits in my years of marriage, and a new year on the calendar that hopefully will have less sorrow associated with it.

But I am thankful for 2011. It has changed me in good ways. And the truth is, if I had to choose between being Daniel's mother this way or not at all, I would choose this. I am thankful for him and how his life has changed mine.

It was a year ago today that I came home from that ultrasound appointment and found myself standing alone in my kitchen, looking around my house. I remember how even though I was in such a familiar place, everything looked and felt unfamiliar. Everything had changed. And not just for that day, but forever. Whatever the outcome, we would never be the same.

Daniel's balloons

Originally posted on my other blog August 14, 2011


About two weeks before we found out about Daniel's condition, I was shopping for a Christmas present for Dave when I found some hot air balloon wall hangings that I loved. I thought they would be perfect for the baby's room. Although I thought they would be great for either a boy or a girl, I decided to hold off until we found out the gender, just because I wanted to have a plan before I started buying stuff.




We learned on January 6, 2011, that our baby boy probably had dwarfism. The next day, we learned that it looked like it might be more serious and that there was a good chance that he had a lethal form of skeletal dysplasia.


I thought about the hot air balloons again, and I decided that I wanted them. If he survived, I would love them for his room. If he didn't, I thought they would be a fitting tribute to my little boy.

A couple months later, after it had become more certain that Daniel's little body wouldn't last long in this world, I was looking for a locket that I could wear to keep a picture of my sweet boy with me always. When I found this locket with hot air balloons on it on Etsy, I stopped looking. It was perfect. I loved that it went along with the wall hangings that we already had, and it just seemed so right. So I bought it.




A close friend of mine took some family photos of us a week or two before Daniel was born. We used the locket and a special blanket that my mom knitted for Daniel as special symbols of him for the photos.

When Daniel was born on May 10, he was immediately wrapped in two hospital blankets. The one on the outside had baby footprints on it. The one on the inside, the one on his skin, was covered in hot air balloons. I couldn't believe it. I felt that it was a special message to us that there really is more to this than we can see.

I assumed the hospital had many of these hot air balloon blankets, but that didn't make it less special for me. However, I was amazed to learn from one of our special nurses (she was from Angel Watch and had helped us for months in preparing for Daniel's birth, and then was present at his birth, but didn't know about the hot air balloon "theme") that McKay-Dee had only a handful of the hot air balloon blankets. They were actually from another hospital and had been mixed in, in central laundry. So the chances that he would be given a hot air balloon blanket, at least at our hospital, were actually small.


I will never see a hot air balloon for the rest of my life without thinking of my sweet angel baby.

Daniel's obituary and my husband's talk from the funeral

Originally posted May 22, 2011 on my other blog.
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Our baby boy, Daniel, was born May 10. He lived for 32 minutes. We love him and miss him very much. I wanted to share his obituary and the thoughts my husband shared at his funeral.

Obituary:

May 10, 2011-May 10, 2011

Daniel David Miller, infant son of David and Emily Miller, died peacefully in his parents’ arms Tuesday, May 10, 2011, at McKay Dee Hospital in Ogden, Utah.

We were blessed with 32 precious minutes with Daniel before he returned to his Heavenly Father. He lived long enough for us to hold him and to share his perfect, peaceful spirit. We are comforted in knowing that his stay on this earth was filled entirely with love. We know the thoughts and prayers of our loved ones have carried us through this time.

As a family, we spent the months before Daniel’s arrival making memories with him, knowing his time here would be short. We took him to our favorite places with his big brother, Charlie, who loves his baby brother so much. Charlie gave his mama’s belly lots of hugs and kisses over those few months. Charlie enjoyed singing his ABCs and his favorite Primary songs to his baby brother. Daniel’s daddy spent many hours reading and singing his favorite comforting hymns to our sweet baby boy before his birth and during his time with us.

We look forward to the day when we can hold him in our arms again when we are reunited as an eternal family. We are thankful to our Savior, Jesus Christ, for allowing us to feel of the reality and power of his plan of happiness.

Daniel is survived by his parents; his big brother; and grandparents (listed).

David's talk:

I thank my Heavenly Father for entrusting me with all the knowledge, love, understanding, comfort, and grace my heart could possibly contain in these last four months.  I thank my Heavenly Father for sending us Daniel.

Exactly ten years ago from this coming Monday, I wrote in my journal about my engagement to my dear Emily.  Among other things, I noted: “Grandpa Brown’s first comment upon meeting me was, ‘So, I hear you have big ideas.’”  I wrote it then because it was funny.  I write it now because it was inspired, if not somewhat prophetic.

I hope that is how every marriage begins.  It is how ours started.  Big ideas.  Shooting for the stars.  Knowing we could take on the world and all it could throw at us.  Firmly, yet innocently, believing that together, and with God’s help, we had what it takes to withstand anything.  He wanted us to succeed.  We wanted to succeed.  Therefore, we knew we would succeed.  Emily even wrote this to me in a letter once, “I truly believe that you and I can make anything happen together.”

 On that same day pondering our engagement, I wrote:  “It’s interesting to see how everything in your world changes with the decision to get married.  Of course, I wouldn’t want it any other way.”

As time went on and we were blessed with parenthood, we began to wonder if we really could endure everything.  Could we ever endure the loss of a child?  Could we give up the aspect of this life that is most precious to us and brings us the most joy?  How is it possible that parents can endure such pain and still be okay?

Now again, ten years later, we have reached a defining moment in our lives.  Again, I say that everything in our world has changed.  Again, I say that I wouldn’t want it any other way.

After hearing the news about this special boy, Emily remembers returning home and standing, pondering in our kitchen.  Things looked different.  She knew they would never be the same.

 As we walked out of the hospital after the most difficult of our ultrasounds, I had an inspiring realization and testified to Emily that this is what life is about.  It is hard.  These are the trials and the growth that we must have to refine ourselves to become more like our Heavenly Father and Jesus Christ.  This is why marriage is central to the plan.  Because the most difficult and painful trials come from having this type of heartache and soul searching.  Those that are cheating their way through life without truly committing to spouse and family will never grow to be refined in this manner.  This is our preparation for things to come.

This is why in Doctrine and Covenants, the Lord declares that the marriage covenant “was instituted for the fulness of my Glory.”

To paraphrase Elder Maxwell, long after the wars have ended and the chatter of congress has ceased, the great pyramids will have turned to sand and the everlasting family will still be standing.   

The true history of mankind lies within the institution of celestial family.

This is what life, history, humanity, and divinity are about.  We can do hard things.  We must do hard things.  This is enduring.  I have often wondered what it is to truly endure to the end.  Now I have an understanding.

My dear Emily.  I will never view you the same way again.  Everything has changed, and that includes the power, strength, luster, beauty and grace that have given rise within you.  Starting on the night before our first revealing ultrasound when we were to find out if we would be blessed with a boy or a girl, when you prayed at our bedside; before we had received any news whatsoever, you wanted more than anything to pray that the ultrasound would go well, that there would be no concerns, that our little child would be completely healthy.  But your mind was stayed.  Even then, even before the earthly news was given, you were in tune with the will of the Lord. Again, on that next day when we were first given the hint of concern, your strength surpassed mine.  You felt complete peace.  You knew all would be well.  As time went on, you made it clear how certainly you could feel the prayers of others carrying you on.  You could feel it.  I could see it.  You were being lifted before my eyes.

I have always admired the words of righteous priesthood holders, advanced in age, about the divinity of their wives.  I have always wondered how they could testify so convincingly of their wives’ superiority in spiritual matters and closeness to God.  I have always loved the talk in which President Hinckley testified of the divine qualities of womanhood after his dear wife had passed away.  I knew that they could see these things in their wives.  Now I can understand, after a lifetime of such experiences as this, how that beauty and light becomes so bright.  I can see it in you, Emily.  As you carried Daniel’s perfect spirit, I could literally see you transforming and taking upon yourself qualities of our Heavenly Mother.  As the days grew closer to his birth, there were moments that I was awed to be in your presence.  On this sacred Mother’s Day, I believe I could see perfection within you if but for a moment.

Again, I have big ideas.  With this experience and growth, I again believe we can make anything happen together.  Together we can fulfill the promise in the Doctrine and Covenants, “and they shall pass by the angels, and the gods, which are set there, to their exaltation and glory in all things, as hath been sealed upon their heads, which glory shall be a fulness and a continuation of the seeds forever and ever.”

The blessings upon this family have been rich and bounteous.

Charlie.  You have been bold, unyielding, and sure in your resolution that all is and will be well.  You have helped your Mom and Dad with wisdom beyond your years.  You have embraced the role of brother.  You know and have testified to us of your brother’s special spirit and mission.  Looking through what precious few keepsakes we have, you assured us that you could “remember Daniel before we had that.”  You have testified to us of Christ’s atonement.  Your pure faith echoes in my mind as you taught me to say out loud, “I’m okay, Jesus” and “I know this.”

As I admire the growth of my family, I know I have grown also.  I have no ill feelings.  I glory in the Lord’s mercy.  My heart has become full and swells with love for my Heavenly Father and a greater sense of gratitude for the gift of His son to us.  I may understand this now on a level I never previously could have comprehended.

The feelings, thoughts, and triumph of my soul are beyond the capacity of a creature of evolution or chance.  I am a divine creation.  We need only to look within ourselves and we will know there is a God.   I have, perhaps, searched every corner of my heart and mind over the last four months.  I have felt the lowest lows and the highest highs.  I have felt complete agony so much that I writhed on the floor of our home racked with a greater pain and distress than I could have imagined possible.  Only moments later I was convincingly stilled and infused with a peace and calm that was so majestic and noble in force that it was immovable and undeniable.  I was cradled and held by a perfect love.  I believe such can only be granted to a divine being.  A child of God, as we all are.  Those of you who know me well, know of my great love and compassion for animals.  Yet I cannot believe that a simple beast or randomly evolved creature is worthy of such depth.  I am a child of God.   He lives and knows me.  I know this now more than ever.

I know that Jesus Christ’s atoning sacrifice is real.  We have felt it.  This Easter season was the most memorable and meaningful of my life.  We tested and proved the words of President Monson, “in our deepest sorrow, we can receive profound peace from the words of the angel that first Easter morning: ‘He is not here: for he is risen.’”

We have received that promised peace.  And, as promised, Christ has sanctified to us our deepest distress.  It is with joy, that we “draw water out of the wells of salvation.”  We were held up when we could not walk by our own strength.  We know of the reality and divinity of our Heavenly Father’s plan.  We are thankful that the experience of bringing Daniel into this world is part of our mortal ministry and eternal calling.  We are grateful in knowing that Daniel’s heart forever belongs to our Heavenly Father and Lord Jesus.  We are grateful that he will never wander and is free from the troubles and imperfections of this world.  We are grateful that he beckons us home. 

We will never forget, as even the hospital staff emotionally confessed, the perfect, peaceful spirit that he shared with us.  That short moment is forever imprinted on our hearts and we forever yearn to eternalize that glimpse by honoring our covenant marriage.

As I listened to the seconds ticking away in the wee hours of the morning before his birth, I remember wishing briefly that I could stop time.  No more.  Now when I hear a ticking clock, it is counting down the seconds till I can see him again.  As Emily and I left for the hospital that sacred morning, I comforted her by promising that his life would be like a beautiful song.  It was.  And as we left several days later, that thought re-entered my mind.  Yet this time, it was different.  His song isn’t over.  It goes on.  And if we improve our hearing, we will still hear the notes from time to time.  As my beloved mission president, D. Michael Stewart counseled, “We must improve our hearing.”  I also remembered his counsel as we prepared to leave our hospital room, which had become our sanctuary.  “After the wisemen met the Messiah, they went home a different way.  Once you’ve met the Messiah and danced with the angels, go home a different way.”

We have danced with an angel.  We have gone home a different way.  Different people. Forever altered for the better.  Again, I say that everything in our world has changed.  Again, I say that I wouldn’t want it any other way.  I am forever thankful for Heavenly Father’s steady guidance and perfect knowledge in carefully yet deliberately shaping us and molding us to become more like Him and his Son.

Several years ago, I came across the words that President Joseph F. Smilth spoke to his dear young daughter, Jody, at her funeral.  They moved me so deeply that I asked Emily to type them up and print them for display in our home.  As we learned more of Daniel’s special mission on this earth, the words took new meaning to me.  They became as if they were my own.

“Dear Jody, my babe, I love thee.  My ambition is to see thee shine pure and bright amid Earth’s noblest.  I love thine innocent prattle and thy little footsteps.  Thy voice is as the music of an holy angel and thy cunning little ways more pleasant and endearing than the voice of love.  Thou hast made me a better man.  For thy sake I love humanity, Earth and Heaven more.  Thou hast drawn me nearer unto God and purified my heart.  For thy sake I beseech God with greater faith and fervor on behalf of all children and my sympathy is aroused more keenly for those bereaved.  Thy bright spirit lightens all my cares and makes all Earth to me seem good.  Oh, my darling, how I love thee.”

And now, my love overflows as I address my own son.

Daniel, we are happy for you, son.  We do rejoice in your triumph.  You have inspired change.  You have made us better.  Our hearts ache but they are strengthened and beat more purely.  Our minds grieve but they are determined and resolved as we focus more intently on attaining eternal unity.  You have allowed us to feel a glimpse of what our Heavenly Father and Mother felt as they gave up their beloved Son and our Savior, Jesus Christ.  You have taught us the unassailable power of sacrificing our wills only to be enveloped by pure love and sweet assurance as we accept our Heavenly Father’s.  You have helped us grow first in having faith and then to tangibly feeling faith in Christ’s Atonement.  As we have searched our souls, you have given us the hope of our own divinity.  You have shown us so clearly that there is more.  We promise to remember.  We promise to do our best to see you shine again.  We love you ever so dearly.

In the name of Jesus Christ, amen.

Happy things

We finally got Daniel's marker placed at his grave this weekend. I love it so much.






The prints were engraved from Daniel's actual prints, true to size.





It was a happy day. It was a beautiful day. The sun was shining and it was a perfect day to spend some time honoring our little guy.

I posted photos on Facebook when we got back from our trip to Idaho. My mom made this comment on the album:

"I love the pictures. And more than that, I love that you can miss your boy so much and still be OK. You and Dave and Charlie have come a long way."

She's right. We are OK. We certainly still have our sad moments, and we miss him literally every day. I don't think I ever go more than a few minutes at a time without thinking of him.

When I was pregnant with him and after his birth and death, I sometimes wondered when I would see the light at the end of the tunnel. I had faith it would come. I knew from others' experiences that while the heartache really never goes away, that I could still be a happy person. Sometimes I felt like I had to give myself permission to be happy. As a grieving parent I felt hesitant to be happy, as if being happy would somehow dishonor Daniel. I know better now, but it was something I had to learn.

But the truth is, I am a naturally happy person. And I know that Daniel wants me to be happy! I know it! I know that his spirit lives and that we will be together as a family again someday. I have had special moments when I know his presence has been close, and I know Dave and Charlie have, too. I hesitate to even share that because I don't want anyone to think I'm crazy or grasping at straws, but at the same time, I want to bear testimony that through this experience I know that Daniel has a living spirit, and that the rest of us always will, too.

My church just had its semi-annual General Conference where church leaders from all over the world choose their own topics and address the entire church to teach the gospel and inspire and uplift us. Those who share my faith won't be surprised to learn that I listened with heightened interest to the talk from Shayne M. Bowen, addressing parents who have lost children.

I loved the whole talk, but especially this part:

Tyson has remained a very integral part of our family. Through the years it has been wonderful to see the mercy and kindness of a loving Father in Heaven, who has allowed our family to feel in very tangible ways the influence of Tyson. I testify that the veil is thin. The same feelings of loyalty, love, and family unity don’t end as our loved ones pass to the other side; instead, those feelings are intensified.

 I loved that part because it validated that when you lose a loved one, you can, at times, still feel their presence close. "Tangible." It's true. We have known it, and we hope for more special experiences as we wait for that wonderful day when we will be together again.

I also have a tiny miracle to report! Daniel is going to be a big brother! We are going to have another baby, due in April. We don't know if it's a boy or a girl yet, but we probably will within the next few weeks. All babies are miracles, but I use the word because we usually have to wait for our babies. It took 5 years of trying before we had Charlie, and then 3 years for Daniel. But this little one is much more punctual! In fact, we weren't even trying when this one decided to come along. Imagine our surprise when I took a pregnancy test only because I was one day late and not at all expecting a positive, and it was positive! I always have big ideas for how I will tell Dave I am pregnant, but I was in such shock that I just walked over to him and put the test in front of his face. We were both totally surprised. I am 13 weeks along right now, and as far as we can tell, the baby seems to be growing normally. I don't think I'll really be able to breathe that sigh of relief until our big ultrasound in a few weeks, but we have no reason to expect anything to go wrong. But prayers are always welcome, of course. :)

The Digger Wasp

I am compelled to write right now as I sit in tears after reading a poem I didn't expect to have this effect on me. It's called "The Digger Wasp," from Paul Fleischman's "Joyful Noise, Poems for Two Voices."

The poem is from the point of view of a mother digger wasp who knows that even though her children will never see her, they will know her and know that she loves them. She prepares a nest and food for them, trusting that they will know it was a loving mother who made the preparations.

I just got the book today. I flipped it open to the middle, choosing a random poem to read. I was hit immediately by the first words, "I will never see my children, they will never gaze on me."

I don't think Daniel ever saw me. He did open his eyes while he was being handled by the doctors and nurses, but once he was in my arms, he had closed his eyes and wasn't trying to open them anymore. But I talked to him. I kissed his face and whispered that I loved him. I held him close. I hope that, even though our eyes never met, he could feel his mother's love.

I haven't written much here because I got stuck. I didn't know what to write next. I have decided that an account of the rest of the day he was born would be better kept private. It was a very hard but very important and special day of our lives, and I don't want to share it publicly.

But I do want to keep writing as I feel prompted. When I started this blog, I had big ideas. I wanted it to be a place where I could honor my little boy by telling his story, but also by documenting the ways that I was going to live my life fully and honor his memory. I wanted to tell you all about how I had a new appreciation for a healthy body. Daniel didn't get a chance at life with a healthy body, and I felt like I shouldn't take my healthy body for granted.

And I still feel those things and I want those things, but again, I was stuck. While I do want to maintain a hopeful spirit and share the joys of life and health here, I'm still a grieving mother. Some days I do actually feel really hopeful and happy and like everything is fine and okay and I can do this life and make it a good one, even though it hasn't gone according to my plan. And then there are days when I feel like it's all unfair, but what does "fair" mean anyway? Life isn't fair, right? But doesn't it still seem "unfair" that David and I have to wait so long for our babies and then we lost Daniel? Doesn't it seem "unfair" that we don't know when or if we will have more children?

I have always been able to stay fairly positive when it comes to dealing with friends' and family members' pregnancies. But this week, especially, has been a hard one. It seems like everyone I know is announcing a pregnancy or what gender they are expecting, and everywhere I go it seems like I'm the only one without  a baby in my arms or in my belly. And I always wonder, "What do they think about me?" Do they know that I actually gave birth to a beautiful 10-pound baby boy just months ago? No, they don't. Do they wonder why I only have one (living) child? Do they have theories about my situation? I listen to the other moms at preschool talking about their babies' milestones, wishing I could be part of the conversation but sitting in silence. Daniel would have been about the same age.

Sometimes I wish that I  lived somewhere where it is normal to have one child. It's not normal here, at least in my circles. I shouldn't care that this makes us different, but it's just one more thing that I think about.

I showed this blog to my friend who also lost a baby to TD. I told her I was stuck and that I didn't want to write again until I was in the right frame of mind to make good on the plans I had for it.

She told me to write anyway. That this was real. It takes time to be in that frame of mind, and it's okay that I'm not there yet. I thought that was good advice.

Daniel's life

And there he was. My sweet baby boy. My BIG baby boy! Babies with TD are generally quite small, and I was expecting him to be maybe 5 pounds. My Daniel was 10 pounds! He had short arms and legs, but he was a big boy.

"Oh, sweet boy," I said.

My doctor took him to the nurses to be quickly cleaned and wrapped in his blankets, before giving him to David to bring to me. We held him between us while David sang to him the songs that he had sung to him before his birth. We hoped hearing his daddy's familiar voice would bring him comfort.

David asked if someone could please get my father, to come and assist in giving Daniel his name and blessing, a special religious rite that we were thankful to have time for while he was alive, and thankful that the hospital would bend the rules enough for us to invite my dad to be there.

After his blessing, Daniel was given back to me, and one of my nurses helped me to wrap my arms around him (I was still in surgery). I remember putting my forehead to his. He was so still and peaceful. I just hoped that he could feel how much his mother loved him. So much.

It was during this time that I had a feeling that his spirit had left his little body, though there was no obvious physical change, as we could not detect his breathing while he was alive. I didn't know for sure, but there was a moment when I just had a feeling that his spirit had passed on. I didn't say anything. I just held him and loved him.

If I'm remembering correctly, David took Daniel back to the nurses to see if there was anything we should be doing differently. If we should be holding him differently, etc. At that time, one of my nurses came over to me and looked me straight in the eyes, deeper than anyone has probably ever looked right into my eyes. She had tears, and she bent down to put her forehead on mine.

"You are a beautiful, special mother," she said.

My surgery was finished and they began to wheel me toward the door. David had been with the nurses, and he brought Daniel back to me. I asked him, "Is he still breathing?" There was a hush in the room as he and the neonatologist told me that, no, he wasn't. He had passed away in my arms. David bent over and put his face on mine while we cried. I glanced around the room and saw everyone else perfectly still and perfectly silent.

The records say Daniel lived for 32 minutes. We had hoped for more time, but we were so thankful we had at least a little time with him.

Daniel's story, before his birth

On January 6, 2011, my little family joined me at my doctor's office for what we believed would be a standard ultrasound. After trying to conceive for about three years, I was finally pregnant. I was 19 weeks along and we were all anxious to know if it was a baby brother or a baby sister. My husband, David, had a feeling it was a boy, but our 4-year-old son, Charlie, was certain it was a boy.

"Is it a brother?" Charlie asked when the sonographer indicated it was time to find out. I remember feeling so happy when she told us that, yes, it was a boy. I'm sure I would have been just as happy to find out it was a girl, but knowing a little more about our baby's identity was thrilling either way. I was so excited, and so happy that Charlie would have his baby brother.

But as the ultrasound went on, I could tell that our sonographer was concerned about something. My untrained eye could only see that his forehead looked large. She spent a lot of time looking at his chest, so when she told us that his heart looked good, I was so relieved.

As she wrapped things up, she put her tools down. The moment is recorded in my mind when she said, "I've got to be honest, you guys. I have some concerns."

She told us that our baby's long bones (arms and legs) were alarmingly short and she was concerned about the shape of his head. She said there was a good chance that he had some type of dwarfism. She told us she would get us a room to wait in so that we wouldn't have to go back to the waiting room to process this news while she was talking with the doctor.

As we sat, waiting for the doctor, I remember saying, "I love my boys... all three of them."

"I love my boys" is a phrase I use a lot, usually when I am observing a sweet moment between David and Charlie. Although I was surprised by the news from the ultrasound, I was feeling very happy to add another boy to the family.

When it was time to speak with my doctor, he told us we would need to see a specialist to learn more about our baby's condition. He said there were hundreds of types of dwarfism (a.k.a. skeletal dysplasia), and that some of them were lethal conditions. That possibility hadn't even occurred to me, but I didn't feel too worried. I felt that the chances of it being something that serious seemed so slim, that I wouldn't dwell on that possibility. We would just hope that if he did have dwarfism, that he would be healthy. We knew we would have to learn a lot about it and that it would affect our lifestyle in a big way, but we would wholeheartedly embrace that scenario.

The nurse was able to schedule an appointment for us with a specialist the very next day.

I remember coming home that night, standing in my kitchen and looking around, knowing that everything had just changed. My whole world looked different, even in familiar surroundings.

On January 7, 2011, we dropped Charlie off to play with some friends while we went to find out more about our boy. At our appointment with the maternal-fetal specialist, one of the first things the sonographer told us was that the baby appeared to have a cloverleaf skull. This was a term I had come across in the information I had found online the night before, and I knew that it was associated with thanatophoric dysplasia, a lethal condition. So hearing that our boy appeared to have it caused me to really worry for the first time.

Later, we talked with the doctor and a genetic counselor. They both suggested that it could be thanatophoric dysplasia, but that they couldn't be sure without further testing. They left us alone in the little conference room and gave us time to let it sink in.

When we left, I called my mom right away. I told her it didn't look good. She and my dad packed their things as quickly as they could, and they drove the three hours to our home to be with us.

The next morning, a Saturday, I got up before everyone else. I couldn't sleep anymore. I got online to learn more about the different types of dwarfism to compare the characteristics to what we knew about our boy.

My heart sank when I learned that dwarfism with a cloverleaf skull was associated only with thanatophoric dysplasia, type 2. If my baby really had a cloverleaf skull, as they thought he did, he was going to die and there was nothing anyone could do about it.

I remember that morning, feeling like I was the only woman in history to receive this kind of news. I wondered how I could do it. How could I survive the next four months of pregnancy knowing that my baby was going to die?

What I knew was that as long as my baby was inside me, he was okay. That continuing the pregnancy meant I could very likely go to full term. That when he was born, he would probably die within a few hours - a day or two if we were lucky. Because of the likely diagnosis, his chest would not grow large enough to allow adequate lung development. When he was born, his lungs would not have the size or maturity to support life, even with a respirator.

But as long as I was breathing for him, he was okay.  

Terminating my pregnancy was not an option for me. I felt very strongly that it would be in God's hands and I would do what I could to preserve my precious, prayed-for child as long as I could.

David and I chose to postpone genetic testing for a while. We knew the official diagnosis wouldn't make a difference to whether or not I continued the pregnancy. If we were going to do the testing at all, we would wait until the last few weeks. It was our way of maintaining some hope that the suspicions were wrong and that our boy would be okay. Knowing for sure that he was going to die seemed like it would make the remaining months of my pregnancy even harder. But I'm not sure we were right about that. The uncertainty was very hard, too.

I don't remember how far along I was when I had my amniocentesis, but it was past 30 weeks. It took several days longer than we expected to hear the results, which actually made me feel hopeful that it wasn't what they suspected, and that they were running more tests.

It was a late afternoon in April when I answered a call from one of our genetic counselors. He confirmed to me that, yes, our little boy had thanatophoric dysplasia, type 2. I held it together okay on the phone. This wasn't unexpected. I had been preparing to hear this news for three months.

But the minute I hung up the phone, I felt the worst emotional pain I had ever experienced. For the first time in my life I felt like I really knew what it meant to feel my heart breaking. I called David at work and asked him to come home.

The news hit him like a ton of bricks. In the months since we had first learned about Daniel's dwarfism, David and I had handled the situation very differently. I felt like I had accepted the probability of TD and was working my way through some of the grieving, even before the baby was born. I tried to have hope, but for me that hope was believing that everything was part of a bigger plan and that we would be okay, even stronger, from this experience. I have to admit that I did not feel hope that Daniel would survive, as much as I wished I could feel it.

But David could. He maintained hope that our baby was going to be okay. We knew he would be different and have special needs if he survived, but David believed he would be okay, even by a miracle.

When he heard the confirmation of thanatophoric dysplasia, it knocked him over. He had been so hopeful for so long despite the suspicions. And in an instant, it was gone. He had to start again, on a new path with new information.

This whole time, Charlie was such a comfort to us. When we first told him that his baby brother might go back to Heaven, Charlie was very upset. He said that he wanted his brother here, and that it wasn't okay for Heavenly Father to take him back. It broke my heart for my little boy to have to learn about death and process all of this at such a young age. And I even felt like I had done something wrong and that I was taking his little brother away from him somehow. I felt sad for him that he wouldn't have a playmate. Someone to grow up with. Someone to be grown up with. And I felt sad for myself that I wouldn't get to see Charlie being a big brother in the typical way.

But Charlie has a big, resilient spirit. He seemed to come to an understanding and acceptance of the situation, and became our little sadness police. Whenever he would hear me or anyone crying, he would come to the rescue with lots of tickling. (In fact, he just did it again as I was writing this.) He told us that it was okay, and that "our baby" would be with Heavenly Father and Jesus. He told us he wasn't sad about it. Without prompting, Charlie chose a blanket of his that he wanted to give to his baby brother.

We did what we could to make memories with our baby while he was still with us, in my belly. Our most notable outing was to the zoo. We took lots of pictures, bought some keepsakes to put with his casket, and talked about him a lot, hoping that Charlie would remember this time "with" his baby brother.

We asked a good friend if she would do some family pictures for us before the baby came. What could have been a somber photo session, wasn't. It was fun and joyous, and the photos she took will always be some of our most treasured.

When I was 34 or 35 weeks along, we went back to see our specialists (as we had many times at this point). We learned that our baby's head was measuring very large, and that if we didn't deliver soon, it was potentially dangerous to me and definitely to future pregnancies because of  the chance of a more complicated surgery (a regular delivery was not an option because of his head size). We knew that he would have a large head, but the news that it was larger than we even knew and growing quickly was a surprise.

Our doctor gave her recommendation, and then left the decision with us for when our baby would be born.

I felt, very much, like this was not a decision I should have to make. No one should. Choosing a date for my baby's birth was also choosing a date for my baby's death. It was so heavy. Ultimately, we decided to push the limits of what my doctor had suggested, and deliver on May 10 at 37 weeks.

Not only did we have to decide when it would happen, but we had to decide what interventions, if any, would be used to prolong his life. We learned of a handful of cases in which a baby with thanatophoric dysplasia actually survived (even though the diagnosis is "incompatible with life"). This information made our decision very difficult. We knew the odds were against our baby surviving, but knowing that it had happened meant that we had to think very seriously about what interventions we would request.

We were so, so torn on this. It was so hard to talk about, and so difficult to know what the right choices were. On one hand, we wanted to do whatever we could to help him live. But our biggest fear was that our baby's short life would be filled with painful urgency instead of the peace and love of just being held and comforted by his parents. I was so scared that I wouldn't get to hold him while he was alive because he might die while the doctors were trying to save him.

How could we make this decision when we didn't know how it would turn out? We had to put our trust in God, and ask him to help us make the best decision, and then to trust ourselves with it.

We chose to give him a nasal cannula with oxygen. This felt like the best choice, as it would help him breathe if he could, and we could still hold him and love him.

The people we worked with at the hospital were amazing. They, and an organization called Angel Watch, helped us coordinate everything to our wishes for our baby's delivery. They were all so sensitive to our situation and very loving to our family. They helped make a very hard situation just a little easier, knowing that it would be handled the way we wanted.


On May 10, David and I got out of bed early after not sleeping much. We had to be at the hospital at 6 a.m. We shared some special thoughts and prayers on our way and in the parking lot of the hospital. I remember, so clearly, walking into the hospital that morning, knowing that when I walked back out those doors, my life would be forever changed.

In my room on the L&D floor, I was prepped for surgery. During that time, the baby's heartbeat and my contractions (which were surprisingly close and big that morning) were being monitored. I remember listening to his strong, healthy heartbeat, knowing it wasn't going to last much longer. My sweet baby boy, who I wanted so much, was almost here and almost gone again.

Sometimes I wonder how I walked to the operating room on my own two feet. How did I do it? I don't know, except that I was blessed with a calmness that morning.

In the operating room, I remember feeling so calm. So relaxed. I didn't feel the nerves that I expected to. Just peace. What a blessing.

The surgery took longer than I expected because his head was stuck (he was breech, and his head was up by my ribs). I remember saying a silent prayer, asking my Heavenly Father to please bless my doctors that they could deliver him and keep me safe. Shortly after my prayer, I felt his head finally come loose. I turned to David to tell him. I said over and over, "Here he comes. Here he comes," until I heard my doctor say my name. I turned my head toward her voice.

"Here's your baby," she said.