Parents Joyously Admire Their Son Connor

Choosing Joy in a Time of Grief

By Whitney Voigt, Connor’s Mom

Losing a child brings on all sorts of emotions, most of which are predictable – sadness, anger, anxiety. But there is another side of grief that we did not expect – choosing joy.

For my husband and I, our journey through loss started well before our son’s death.

Connor was born with many medical complexities and when he was 3.5 months old we learned of his ultimate diagnosis (Walker-Warburg Syndrome). At that time, we learned that his life would be shortened in some capacity. We will never forget hearing the doctor say “debilitating disease” and falling to the ground in realization that we would have to bury our first-born child one day. In that moment, we felt like we had already lost him. It was the 2nd worst day of our lives.

But with the support of close family and friends, we all kept fighting for Connor. We were determined to make whatever time he had on this earth as joyful as possible.

The darkest of all days came on December 11, 2015, when our hearts were completely shattered as Connor lost his battle due to complexities of the congenital muscular dystrophy caused by this rare genetic disorder. We had feared this moment for months and then all of the sudden it happened. There was a surge of pain and sadness that filled our bodies that night and it was almost impossible to leave the hospital room.

However, in the weeks following Connor’s death, our sentiment started to shift in an unexpected way. While everyone around us was experiencing the pain and loss that we had been feeling since the day of his diagnosis, a sense of peace and gratitude came over us. Peace in knowing that he was free from surgeries and any future traumatic events, and gratitude for the time we got to be with him. Instead of looking down in sadness, we started to look up to the sky and smile to our angel in heaven.

At times we would beat ourselves up for not crying when we talked about him. He died – we should be a constant wreck, right? And then we would remember that grief doesn’t affect everyone in the same way. Our journey is definitely different than what we anticipated after learning of his ultimate fate. Of course, there are still many moments of sadness and anxiety because of our loss, but over time the memories of him brought more smiles than tears.

Connor’s spirit is alive and very much present in our family dynamic. Our three other children – all of which were born following his death – know about Connor as the “big brother guardian angel.” He paved the way for our family.

Our journey through loss was not filled with all the dark clouds like we would have expected. Rather, we made the choice to go on with our lives by honoring his memory and remembering every moment that I got to spend with him on this earth. We did not choose to be bereaved parents, but we did choose to persevere through the grief with joy.

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