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.