How does one cope with the death of a child?

      How does one cope with the death of a child?  At what age the loss occurs determines the depth and breadth of the experience.  Each is different, with one commonality - the hole in our soul where our child is missing.  Permit me to tell you my story.

Ultrasound technology was in its infancy in the late 1980’s, but I knew in my heart I was carrying a boy.  I wanted to give my husband a namesake with whom he could create wonderful memories, the kind he did not have growing up.

      In the wee hours of Monday, March 9, 1987, nearly two weeks after his due date, our 10 lb. David Russell made his entry to the world, named after my husband and my father.   Our elation turned to despair that afternoon when a doctor told us that baby David had a significant heart murmur.  Testing revealed he had Hypo-plastic Left Heart Syndrome –the left side of the heart was underdeveloped and could not pump oxygenated blood to the body.  We were told there was nothing we did to cause it, as if to absolve us of inevitable feelings of guilt.  I knew logically there was no reason for guilt because we had a generally healthy lifestyle.  I remember being given three choices:  let him go, put him on a list for a heart transplant, or try a relatively new surgical procedure that could keep him alive until the chances of heart transplant were better.  David and I dissolved in tears in each other’s arms.  We just couldn’t imagine saying goodbye to our son so soon, and couldn’t fathom wanting someone else’s child to die so ours could have a new heart. We would have given our own hearts if we could.  After spending a sleepless night at our baby’s side in the NICU, filled with tears and prayers, the next morning we followed an ambulance to Philadelphia, where we lived the next few weeks at the Ronald McDonald House (RMH).   In this age before internet and cell phones, a few long distance calls generated much faith and prayers on his behalf around the continent.  Within a few days of surgery we were able to hold and practice feeding and giving medicine in preparation for taking baby David home.  I called him ‘my little bear' for the growly noise he made in his throat after the NG tube was removed.  One day we had left the hospital to rest at RMH and got a call to return right away.  Baby David had gone into cardiac arrest and it took an hour to revive him.  Our hopes were dashed.  He spent the rest of his short life in the Newborn Intensive Care Unit (NICU) connected to various tubes and machines. 

       I had to return to work the last week he was in the hospital, which was excruciating for me.  My husband had to return to work right after birth – no leave for fathers in those days.  Every day he would drive 45 minutes to Philadelphia to visit.  David later said he would stop at home and cry every day after work.   The nurses called with updates daily. Once the nurse said baby David was being irritable when they tried changing chest tubes.  They decided to play the LDS children’s music I had set up for him.  He calmed right down and they were able to complete the procedure.  I had spent my entire pregnancy working with the children’s program at church and so he was familiar with the songs we sang frequently.  This was a comfort to me, to know that he found comfort in the music he heard in utero.

       We spent Easter weekend at the hospital.  Baby David was bloated and looked so uncomfortable that I could hardly stand it.  We asked a local LDS Priesthood holder to assist in administering a blessing.  We felt calmer afterward, though there was no miraculous healing.  Between midnight and 1:00 a.m. on the morning of April 19, Easter Sunday, my husband and I went down to the cafeteria for a snack.  If I may digress, a few days before while sitting next to the NICU bassinette with baby David’s hand wrapped around my index finger, looking intently into his eyes trying to will him to get better, I felt his soul pleading with mine to let him go.  If you have never had such an experience, it is difficult to describe, but impossible to forget.  When I told my husband later, he asked if I wanted to, and I said no, of course I didn’t want to let go – who in their right mind would want their child to die?  Now, some may think I was out of my mind to have such a thought come to me, but they would not understand my belief borne of experience that the spiritual is real and that spirit can communicate to spirit.  I now take you back to the wee hours of Easter Sunday in the hospital cafeteria, where David and I asked each other if we were willing to let him go at this point, seeing the desperately terrible condition he was in, and we agreed we couldn’t handle watching him suffer any more.  We both then needed to use the restrooms and I was interrupted by furious pounding at the door.  We rushed upstairs to find that our son was gone.  The time of death was the moment we had made our decision.        I remember wanting to cry on David’s shoulder, but his reaction was stiff with clenched fists.  We all react to grief differently, and he claims no memory of this.  I recall that one of the nurses let me cry on her shoulder, and then baby David was prepared for me to hold one last time.  I held and rocked him as long as I was permitted.  This was a small comfort to me, as holding him was rare during these weeks in the hospital.

The next hours and days were a blur of talking with doctors, nurses, our Bishop (who had buried his young daughter just months before), family, home and visiting teachers, funeral home, searching for a burial place.  Ever since, Easter Sunday has been bittersweet as we remember our Savior’s sacrifice and the passing of our son. 

      We learned of a small country church cemetery in Pennsylvania.  On the way, I had an impression that it would be nice for baby David to be buried by a pink Dogwood.  Upon arrival we saw workers digging a grave and inquired, learning that five family burial plots were available for a very affordable price.  The location?  Next to a pink Dogwood tree.  This has been a comfort to me through the years as I have watched that little Dogwood grow and spread its beautiful blossoms over that final resting place whenwe have gone to place flowers, release balloons, and somberly remember.

       We held a viewing and then a small graveside service with close family and friends.  One of our Heavenly Father’s tender mercies is humor, and we were gifted with a good dose at this time, albeit at the expense of our good friend Kevin’s dignity.  While helping to lower the tiny casket into the grave by hand, he nearly fell in.  I know, not funny at all, right?  However, considering his very fastidious and meticulous nature it struck us such that we laughed all the way home.  How else could we have coped with the heart-wrenching sorrow of putting our son’s body in the ground?  

         In the days after the funeral, we returned to work and faced well-meaning questions about our baby, telling the story over and over again.  There were all the nice people on the bus, in the cafeteria, casual acquaintances in stores we had frequented.  I couldn’t be angry at them – how could they know?  I was astounded that so many women who had been so supportive of me with faith and prayers, suddenly opened up to me with their stories of loss.  How could I feel sorry for myself when one dear woman had given birth to eight and lost four?  Now there is a fine line between feeling sorrow and feeling sorry for oneself.  I felt, and still feel, sorrow to the depths of my soul and have cried out in anguish, even anger, wishing none of it had ever happened and that we could raise our son like others got to raise their children.  I thought I could cope with faith, but didn’t understand why my husband was being handed such a burden of grief after all the sorrows he had already experienced in his life.  For me, the fact that so many other women had suffered infant death and moved forward to find joy in life gave me the hope I needed.

         In the months after, as life got back to its usual routine, little reminders would randomly pop up like a song on the radio or random thoughts that caused me to run a stoplight or burst into tears while driving.  I received at least one specific answer to prayer that has given me great comfort.  Faith and prayer are the wings that lift me when the weight of grief threatens to crush my soul.

Not long after Baby David’s passing, I was out with my friend Lisa and her young daughter.  We stopped somewhere and little Lauren and I were alone in the car for a few minutes.  I was staring out at the night, and this intuitive little girl looked at me and asked, “Are you sad about Baby David?”  Out of the mouth of a babe came words of comfort. 

        I can’t speak for my husband, only myself.  I do know it has been a terrible burden for him to bear.  One thing we have shared is the inability to sit through a hymn that was sung for baby David’s graveside service.  It is a beautiful hymn, yet produces a wave of grief that turns on the tears.  I have even asked music coordinators at church to warn us beforehand so we can excuse ourselves.  A couple of years ago when we were cleaning the church with friends, their teen daughter started to play piano and we heard the most beautifully comforting arrangement of that hymn.  David said he had been thinking about our son while cleaning just outside the chapel door just before the music started.  This happened other times when he would be thinking or praying about baby David and then he would hear that hymn.  Mind you, it is not one that is commonly or frequently played or sung.  It feels like a message of comfort from our son, that he is mindful of us.

      Another time recently, I was enjoying a cute redheaded toddler at church who always acted shy around me.  I sat next to his family in church one Sunday and suddenly I started thinking about baby David, out of the blue.  Next thing I knew this little boy climbed on my lap and put his head on my chest for a moment before going back to his mommy.  I felt this was a direct message of comfort for me.

So, how does one cope with the death of a child?  For those who do not embrace faith I cannot speak.  I personally cannot imagine trying to cope without the faith and the spiritual experiences with which I have been blessed.  Conversely, I am sure that those without faith cannot wrap their minds around my thinking.  I can only hope that my experience can encourage others to take the leap of faith that will land them in the comforting arms of our loving Heavenly Father where joy replaces sorrow.  Finding joy in life, moving forward in faith, has kept me going when the weight of grief threatens to crush.

       Another of our Heavenly Father’s tender mercies:  about six months after baby David’s passing I had a dream wherein a blond and blue eyed little girl said to me, “I love you Mommy” and a feeling of joy filled me.  About nine months later our daughter Rebecca was born, with blond hair and blue eyes.  We later had another daughter, Shawna, and life has been a whirlwind of trying to be a decent parent while juggling various family, church, school and extracurricular activities.  We now have the joy of our first grandchild. 

As we have seen friend’s sons born in 1987 grow to manhood, there are occasional pangs of grief for what we are missing, mixed with joy for our friends.  I like to think that our son David Russell is happy serving a spiritual mission, and watching over his parents and sisters here on earth.