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