For Every Untold Story

This year, our family decided to do another tree for Annie at the Festival of Trees. We miss her always, but somehow, it hurts even more during the holidays. This past Halloween, I followed behind my two little daughters, both dressed in their princess costumes, when my heart was pierced with the thought that there should be one more- I should have three little princesses running ahead of me on the sidewalk. While we cannot keep ourselves from the "if only's," planning and decorating Annie's tree has proven to be therapeutic for our entire family. It feels good to honor and remember Annie in this way and we are always happy to give back to the hospital that invested so much in her. Thank you to all who helped. Thank you for your love... it means the world to us.

FOR EVERY UNTOLD STORY

Our sweet Annie Grace was born on March 30, 2010. In spite of her serious heart defects, we had many reasons to hope for her future, and we dreamed of the day that we would bring her home to our family. We held onto that hope as she faced her first open-heart surgery at three-and-a-half weeks of age. We clung to that hope when she endured, yet another, open-heart surgery at just over two-months old. As the days and weeks stretched into months spent in the cardiac intensive care unit at PCMC (every day filled with endless procedures and surgeries), it was our hope that gave us the strength to walk through those hospital doors day after agonizing day. Near the end of Annie’s life, the doctors told us that there was no hope for Annie and that our dream of bringing her home would not be realized.

With broken hearts, we said goodbye to our blue-eyed angel on August 1, 2010. In four short months, Annie changed everything for us. While the doctors were right about most things, we are grateful that they were wrong about one thing: we still have hope for Annie… and we still dream of the Heavenly day when she will “come home” to our family. Until then, we will miss her every single day. We will miss first steps and first words. We will miss bedtime kisses and good-morning hugs. We will miss pigtails and ribbons and hair tied-up in bows. We will miss teaching her to drive and watching her fall in love. Until we have our Annie back again, we will deeply miss her “every untold story.”

Time Out

This last weekend, I had the opportunity to attend a Time Out For Women conference in Logan, Utah. My good friend and neighbor, Emily Freeman, was one of the featured speakers and she included in her talk a small piece of our journey with Annie. I attended the conference with three of the other mom's that Emily refers to in this clip. I love these women and know that it cannot be an accident that we all ended up in the same ward together. They have been a huge support to me and I am grateful for their love and friendship. Thank you Emily, for a wonderful weekend!

(Pause the music before watching the video)

125 Days

Dear Annie:
125 Days. That’s how long you shared your life with me. I was given 125 days to know your strong and gentle soul. Not as many as I would have liked, but more than enough to change the course of my life. 125 days of not knowing what would be… every day filled with some combination of hope and dread and fear and faith. 125 days spent aching for you to get better and come home to us. 125 days of heaven so close that some days I could actually feel it. 125 days filled with lessons that I would rather have learned another way… lessons that I know I could never have learned another way.

As we reach your first angel day, I feel some relief in knowing that for the next few months, there will not be any anniversaries- no dates that bring searing and painful memories to mind when I reflect on where we were a year ago. Before you, anniversaries were always something to be celebrated. Not so, anymore. This is not to say that we don’t cherish every moment that we had with you. We just experienced a lot of moments and milestones that we never wanted for you… your first echocardiogram, your first of countless IVs, your first feeding tube, your first MRI, your first (and only) intubation, your first surgery (followed by your second and your third and your fourth surgeries), your first infection… so many firsts, and then, all too soon, your very last breath.

While I have not allowed myself to focus too much on specific dates over the last four months, some are so etched in my heart and memory, that they will always be with me.   In the years ahead, these dates will be significant to me, even if there is nothing written on my calendar.

March 30, 2010: the day you were born. We were nervous, but surprisingly peaceful as we arrived at the hospital that morning. We even laughed at the funny things that happened to us while we were being checked in. The long months of anticipating your arrival were finally over and we were anxious to meet you and love you and be with you in whatever would come. Nervous? Yes. Ready? We hoped so. Willing? More than. We did not know if you would even take a single breath on your own, and the wish of my heart that day was that you would. I prayed to hear you cry at least once before you were whisked into the NICU and likely placed on a ventilator.

In the end, you came quickly, as my babies often do, and the conclusion of my labor was somewhat chaotic. In the final moments, the nurses and doctors rushed me to a room that was adjacent to the NICU and where an entire team was waiting for you and all the complications that your anatomy might present. You were born and we held our breath, hoping that you would breathe. I will always remember the moment that you did. Just as you were handed through the window into the arms of the NICU team, you cried and we rejoiced. A sweet and tender mercy.

April 23, 2010: your first surgery. We had so hoped to wait until you were bigger before this day came. We even brought you home in an effort to help you grow stronger. As it turned out, time was not on our side, and at three-and-a-half-weeks of age, you endured your first major open-heart surgery. I will never forget walking down that hall with you. Letting you go into the operating room that day was one of the hardest things I have ever done. I remember clearly standing at the point in the hall where we were to kiss you and say goodbye. I remember signing some last minute forms while the anesthesiologist kept you alive with that green bag hooked to your portable oxygen tank. You looked stressed, I think because you could tell a difference between being hand-bagged and the ventilator. I wanted to be strong, but as we watched you go, I could not stop my tears. I was scared, and prayed that you were not. After many long hours, we were finally reunited with you. Nothing could prepare us for how you would look after surgery –so incredibly bruised and swollen. But, you were still with us, and we counted our blessings that night.

April 26, 2010: “Black Monday”. We came so close to losing you on this day. I have often wondered, now that I know that we would never bring you home again, why you stayed. Why did you hang-on and fight like you did when it would have been so much easier for you to go? Why did you choose to stay in your tiny broken body, when staying meant that you would suffer like you did? Was your extended mission for me? For you? For others that would come to know and love you? My guess is that you stayed for all of us. I do believe that you had some choice in the matter and I am in awe of your courage. I am deeply grateful for the time that your fight gave us and others to really know you.

June 3, 2010: your second major open-heart surgery. What a quiet morning this was at our house. We awoke with heavy hearts, knowing that within a few short hours we would walk down that dreaded hall with you again. I still remember where we knelt and prayed that morning. I remember knowing that we could not offer more fervent prayers than we did that day for you. We spoke very little on that early-morning drive to the hospital. The world, and even the PICU, felt hushed and reverent to me that day. I was grateful for this, as it helped to calm my very troubled heart. This time around, we waited in your room for the surgery updates. We appreciated the privacy, but your absence was even harder to endure because of where we were. Room #11 had become sacred ground to our family.  But, without you there, it was just an empty, hollow room. You are what made that room (and later Room #10) sacred.

July 4, 2010: your blessing day. I had been holding off on this because I wanted to bring you home and bless you there. Somehow I felt that blessing you at the hospital meant that we were giving up our hope for you. However, as your prognosis deteriorated, I knew that we could not wait any longer without risking that we would lose you first. Your blessing day was a sweet and sacred occasion. Instead of the beautiful white dress that we planned to dress you in, we wrapped you in our favorite blanket (the one that hangs on your crib today) and had our first family picture taken with you. We met our families on the third floor balcony and then walked down to your room together. We were quite a sight, as they normally allow 2 visitors per patient at a time, and we had close to 30 people that came to share your blessing day with us.  That day, I  hoped that you could feel the power and the love that was in your room. It was inspiring to witness so many worthy priesthood hands reaching into the circle that surrounded your tiny crib to bless you that afternoon.  This is one moment in your journey that I will always treasure.

August 1, 2010: the day you died. I answered my cell phone very early that morning with my heart in my throat. I knew that the hospital would not be calling with good news. I hung up knowing that this day would likely be your last. We gathered your siblings on our bed and told them that you would probably be going to heaven very soon. We cried together that morning. We cried for our sister, our daughter, and for ourselves. Dad and I left for the hospital alone, with plans for the others to arrive later. We spent a few quiet hours with you. Because it was Sunday, the Sacrament was brought to your room and blessed and offered to us. I will never forget holding my dying baby in my arms that day, so swollen, so broken, and so bruised, while partaking of these sacred emblems –emblems representing the Savior’s own broken, bruised and bleeding body. I was humbled by this powerful reminder that His sacrifice held the promise that you (and we) would, one day, be healed and made whole again. One of our favorite nurse practitioners joined your dad in giving you your last father’s blessing. Tender and tear-filled, your dad made sure you knew that you were loved. Your siblings arrived at the hospital and after lots of hugs and tears and whispered love, we slowly removed each monitor, every line, and finally, the respiratory therapist removed your breathing tube. We passed you between us and held you close as you took your final breaths and peacefully left your worn-out body behind. I love to think that you left us that day and ran, free from every line and tube and cord, straight into the arms of your Savior. I love to think of you being cared for by Heavenly Parents until we, your earthly parents, can be with you again. I love to imagine the family reunion that happened in heaven on August 1, 2010. A happy occasion for heaven, I am sure.

These are just a few of the 125 days that we lived through with you. I hope you know that in 125 days, you changed everything for me and I pray every day that I will live my life in a way that honors your life and your mission.

Love always,
Mom

Happy Birthday Annie

Dear Annie,

Happy Birthday, sweetheart. Could it really be, that an entire year has passed since you took your first breath and began your life with us? Part of me wonders where the time has gone. And then, another part, feels as though I have been missing you for ages. So many things have happened since we said goodbye: our family has taken a much-needed vacation; we have welcomed fall; frosted Halloween cookies; eaten way too much for Thanksgiving dinner; spent Christmas morning un-wrapping gifts in our new pajamas; celebrated the beginning of another New Year; bundled up for fun in the snow, and snuggled up to stay warm by the fire; and now, your birthday is here, and Spring is upon us at last. All of these...without you. These traditions, seasons, and holidays that have long been a part of our family will never be the same because we will always be missing you, always wondering how it might be different if you were here.

When you were just over 2 months old and fighting for your life, I made a request on your blog. I asked those that loved you and were praying for you to write you a letter. I planned to put these letters in a book so that someday you could experience what we were experiencing every day of your newborn life. I desperately wanted you to know that your life mattered to so many people, that you were deeply loved, and that your heart, even your very broken heart, touched countless hearts. I wanted you to feel even a piece of the immense love that we were surrounded with at that time in your life. I hoped this book would lift your spirit on the sad days and bring you courage on the hard ones that you would surely face. I did not know then what I know now. I did not know that ten months later, we would celebrate your first birthday without you here. I did not know that you would never read those letters and that, in spite of my original intentions, they would instead be a gift to lift my spirit and give me courage to face the sad, hard days without you.

I, of course, wrote a letter to you then, but feel to write a new one now- now that I know that you were not meant to stay with us for more than a few short months; now that I know that your fight for this life would end before we realized our dream of bringing you home and watching you grow.

Annie, the four months I shared with you were an incredible time in my life. Most of your life was a sacred and sweet experience for me. Some of it was extremely painful. To watch a child that you love, suffer like you suffered, has to be one of the most agonizing things a parent can endure. During the last month of your life it became increasingly difficult for me to walk through those hospital doors every day. Most days, before getting out of my car, and in the darkness of the parking garage, I cried, and prayed for courage. I wanted to be near you always, but in those final weeks, your dad and I, for the first time in your life, carried the excruciating weight of making life and death decisions for you on our own shoulders. There was no longer a consensus from the medical team and many had lost hope that you could survive all that you were facing. We had to choose every single day if we would continue the fight for your life or end your suffering and let you go. We prayed mightily to know what should be done and struggled to find the answers that we desperately sought. In the end, you, thankfully, made the decision for us, and we knew we had to let you go.

What a strange thing grief has turned out to be. I always wondered how families dealt with something as tragic as losing a child.  And now, I am learning first hand, that while life does indeed go on, even the smallest thing can take you right back to a time and place when your loved one was here. A certain song, a particular street, even a wristband from an amusement park, or something as small as raindrops on a windshield can have me re-living a piece of my life with you in vivid detail. Last month, I was in a public restroom that reminded me of one at the University of Utah hospital. In an instant, I was flooded with the memory of locking myself in that bathroom, placing my back against the wall, and sliding to the floor in quiet, uncontrollable sobs. I had just been told that our hopes of taking you home soon would probably not be realized. Instead, you would likely be having open-heart surgery in the coming days. The doctor that broke this difficult news to me also informed me that he did not know if you would live. Desperate for a moment of privacy, I escaped to the nearest bathroom and found solace in that unlikely place. While this memory had been forgotten and came unexpectedly, other memories are with me every day, and I choose to visit them, usually because I want to feel you close. Almost every morning, I lay in bed for at least a few minutes and think of our time together. There is something special about these quiet, waking moments and my thoughts are almost always with you.

Your dad perfectly describes this part of grieving as “unpacking” the memories. It’s almost as if the memories we have of you sit on a shelf while we keep up with the necessities of life and then, either by surprise, or by choice, we pull the box down off the shelf and “unpack” a memory, remembering every tiny detail of a particular moment in our journey with you. I have found that all the memories, even the good ones, carry a piece of pain with them. It just hurts to live without you here.

Annie, as I said previously, your life touched many lives, mine especially. While I have not relished learning the lessons of suffering, loss and grief, I cherish the lessons I have learned of enduring hope, forged faith, tried patience, willing trust, human kindness, and perfect love. 

You are so loved. You are forever ours, and for that I am most grateful. Elder Holland once spoke the following words that have helped us through some of our darkest days:

“Some blessings come soon, some come late, and some don’t come until heaven. But for those who embrace the gospel of Jesus Christ, they come. It will be all right in the end. Trust God and believe in good things to come.”

I do trust.  And I do believe.  I have every hope of good things to come with you.  Until then, you will always be in my heart.  I love you.

Love,
Mom