Breathing for Daniel

A while ago, I made another blog about my experience with my son, Daniel, who passed away in 2011, shortly after he was born, from a lethal type of dwarfism. I just wanted to let you know it was there. :)

http://breathingfordaniel.blogspot.com

What's this? I used to actually write things here? I can't believe it's been a whole year since I gave this little blog any attention.

I've decided to give up my Facebook addiction by making my husband change my password so he has to sign me in when I want to use it. I think this is a good thing, but perhaps my underlying internet addiction will mean more time spent blogging. Or maybe not. Maybe I'll develop an addiction to doing laundry.

Quick update on me and mine:

Baby #3 is on his way, due to join us in mid April. He will have an old man name, but we don't know which one yet.

And that's all I think about and all that matters to me right now. See, I told you it would be quick.

It's been a year

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.

Mario cake

My sister-in-law made this awesome Mario cake for my little boy's birthday party. Isn't she awesome?

The castle was made from rice crispy treats, then frosted with black frosting, and then the fondant was added around it. It was perfect! And he loved it. 

What I feel like talking about today.

Today, I cut my own bangs.

I always wear my glasses, but I'm planning to get Lasik soon, so I thought I'd take a picture both ways.

I watched a bunch of Youtube videos before I did it, to learn how to do it right, and I'm really happy with how it turned out.





Life has been busy. I've spent lots of time with my friends lately, and that has been really good for me. I spent a whole weekend with my roommates from my freshman year in college. It was so fun, and a very uplifting time. I love those girls so much.

Last week I also went out for a girls night with another group of friends, and had THE most wonderful time with them. We ate at the Blue Lemon in Salt Lake, and it was delicious. Like, really delicious. I would like to go there every day. And I couldn't ask for better company. I love having friends that I can just sit back and relax with. There's no catching up to do because we keep in touch frequently, so it was just a fun night out. Girl talk, laughter, etc. Besides that we almost got trapped in the parking garage, it was a perfect night. And to make it even better, one of them (a friend I grew up with) spent the night at my house and we stayed up until 3 a.m. We talked about Daniel and looked at pictures, and just enjoyed spending time together.

Friends are really important, don't you think? I feel really blessed to know all of these wonderful women.

On Friday, I had two more friends over just for an afternoon get together. They both grew up in my home ward and one of them has been my friend longer than I can remember. We were born within a couple months of each other on the same street. We grew up going to church together, going to school together, selling door-to-door tap dances together, etc. She's probably been my friend longer than anyone in the world, and it was so fun to catch up and meet her little girl.

Speaking of friends, I think this housing market is actually really good for friendships. I love my neighbors and have made lots of good friends here. And part of that is because no one is moving right now because of the market. But it has given us time to really get to know and love each other, and I think that's actually pretty awesome.

This is how I'm kind of like Oprah

I got 9 comments on my giveaway offer of this album, and since that's not a lot, I'm just going to send it to all of you!

YOU! AND YOU! AND YOU!  (If you left a comment on my last entry.)

And if you didn't, that's too bad for you. 

I really just want to spread the Mat Kearney love. So, if you get it and you don't like it as much as I do, don't tell me. That would ruin my fun. 


I have most of your e-mail addresses, but if I don't, I will be hunting you down to deliver your awesome prize. I hope you like it!

On a lighter note - FREE Mat Kearney album for winner

Everyone should have this album.

It just came out a couple weeks ago, and I am obsessed. Dave has been a fan for a while (and I've been a more casual fan), so he bought this the day it came out. He was playing it in our room while we were folding laundry, and I was instantly hooked. He has a unique and very appealing style. I was surprised when he started rapping (he calls it "spoken word," apparently), but as soon as I just got over that I don't usually listen to "rap," I was all on board.

The songs are catchy, but meaningful. And I love the rhythms. I'm a sucker for a good beat. This is full of that kind of sound and I absolutely love it. He's kind of progressive folk rock mixed with hip hop, and I can't get enough of it. Seriously... it hurts my feelings to ever have to turn it off. 

This is not a giveaway blog and never will be... but I love this album so much, that I want to buy it for all of you. But then Dave would be mad, so I'll just buy it for one of you. So leave a comment if you want this album for free, and this Friday I will use Random.org to pick one of you. I will send it as a gift through Amazon's MP3 store.

Daniel's balloons

(Also cross-posted. I don't know if there are many who read both of my blogs, but if so, please excuse the identical postings right now. My family blog is still the place to go for regular family stuff - I just want to be able to share what I can about Daniel with whomever wants to read.)


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.

Update

Cross-posted on my family blog, because I didn't know how else to do it this time. :)

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It's about time for me to post something here. I haven't blogged for a while because I have felt like anything coming after the most recent posts needed to be thoughtful and not just an any-day kind of post. So bear with me.

I just realized that I haven't actually posted anything about Daniel's birth. I guess I wasn't up for it when it had just happened, and my brain is a little fuzzy lately, and I thought I had written something about it.

I have written about it on a secret blog that I don't plan to keep secret for very long. I have a plan, and I just need to get myself completely on board before I let everybody else in. But I will share the link soon, I hope.

We are doing pretty well. Some days are great, and then I'll have a string of really hard days. I really miss my boy. I am glad we have all the keepsakes that we do. We were able to keep his hospital blankets, and we have perfect prints of his hands and feet and molds of his right hand and his right foot. Daniel was given two little rings in the hospital that he wore while we had him, and I keep one of those on my locket with his picture inside.

In some ways I feel like I still have him. Like I have a different kind of baby. And I know that I do. It's sad that I don't get to have him here with me, but his life has had a profound impact on mine, and hopefully others' as well. And I know that I will have him again someday. I've always known it, but I have also had some special experiences to reassure me of that. Things that have verified to me that there is more to life than we can see.

Daniel's funeral was wonderful. It was a beautiful, peaceful day. My dad gave a beautiful talk. Someday I will type it up and share it (or if anyone wants a copy of the audio from the funeral, let me know and send me your address). My dad is wonderful, and I was so grateful for the words he shared that day and the love he has for me and my family. No one in this whole world has a better dad.

We were so thankful that David's maternal grandfather and grandmother were also there with us on that day. They were on a cross-country trip that they had been planning for months (years?), and they just happened to be in our area at the time of Daniel's funeral. What a real blessing! It was so wonderful to see them, and Pap Pap (Dave's grandpa) was good enough to speak at Daniel's funeral, too. He is an amazing man with the most tangible testimony of the gospel that I have ever known. He and his wife also lost a baby, and he shared some of that experience and what he learned from it.

If you know my little brother, Joel, you probably know that he is a beautiful musician. He has such a beautiful touch on the piano, so we asked him if he could prepare a hymn medley for the service. We asked him to include "Come, Come Ye Saints" and "I Know that My Redeemer Lives." It was perfect. I wish I had it on paper so I could play it every day. His beautiful, peaceful music really carried the Spirit through the meeting.

After Joel's music, Dave spoke. I shared his talk in a previous post, but it was even more amazing in person, hearing it right from his mouth. If you didn't know it already, Dave is an amazing person. I am a lucky girl to have him, and to have a husband with such a strong desire to please his Heavenly Father. There were many tender moments before Daniel's birth and during his short life when I got to see what a truly wonderful husband I have been blessed with.

This may seem an odd time for an endorsement, but I just have to say how wonderful it was to work with Myers Mortuary in Ogden, and White's Mortuary in Twin Falls. Both groups were incredibly sensitive to us. They made it as easy as possible, and they were just so caring. I actually ran into Tracy from Myers at a funeral a few weeks ago. He was the one who came to take Daniel from the hospital. When I saw him, I had such a feeling of love for him and the way he took care of us and our baby. He wouldn't have recognized me (I was probably not at my cutest on the day we met in the hospital), but when I told him who I was, he gave me a hug and we just had a little moment. I told him how much I appreciated the way he took care of us that day. It really does take a special person to be able to do what he does. And Trent at White's was just as amazing in his role.

And while I'm on the topic, I have to say how blessed we were with amazing care providers during my pregnancy and at McKay-Dee during and after Daniel's birth. I met with a couple other TD moms yesterday, and for the first time I realized that my positive experience with my care providers was not just a given. We were truly blessed with amazing people. Our doctors and their staff didn't sugarcoat anything, but they were still somehow so gentle. I never knew I could love my doctor as much as I love both of the perinatologists we worked with at McKay-Dee for those months (and one of them delivered Daniel, too). I will certainly be writing them tear-soaked thank you cards when I get my act together and write thank you cards.

It has been three months since we said goodbye to our baby. I still can't believe that we just did this. Sometimes it is like an out-of-body experience, like I am just watching it happen. Sometimes I force myself into it, to really feel everything and really focus and realize how much has changed. Our family has changed and there are some pretty major personality traits of mine that have changed. Hopefully for the better.

There is more to share, but it will have to be another day. I really just needed to break the ice again. Thanks to everyone who has been so loving and supportive to us this year. We have needed it, and we have been really thankful for it. And thank you so much for all your prayers.

Baby Daniel

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 (last name), infant son of David and Emily (last name) died peacefully in his parents’ arms Tuesday, May 10, 2011, at (hospital).

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 (last name)’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.