Sunday, January 6, 2019

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. ❤️

Sunday, April 26, 2015

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.

Sunday, March 8, 2015

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. 

Saturday, November 2, 2013

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.

Wednesday, March 6, 2013

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. 

Monday, January 28, 2013

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.

Wednesday, January 16, 2013

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

Friday, January 11, 2013

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.