(laughter)
When I think about Henry, I think about his cheeks.
No one could get him laughing more than his big sister. He
would study her, kick his legs, or twitch his wrists in
excitement; coo and giggle at her. Oh that beautiful sound.
Henry arrived early at 35 weeks with a natural mohawk and those
chubby cheeks. Before Henry's birth, doctors had diagnosed him
with Gastroschesis, an intestinal condition that often
has a good outcome. No one was overly concerned, but when he
was born it was much worse than any one had anticipated. He had
90 percent of his intestines removed in an emergency surgery.
Though Henry battled to survive, we realized with shock that he
would never be able to grow and thrive on his own. With the
remarkable support of Henry's hospital team, we made the
heartbreaking decision to give our brave and joyful son the
life we knew he would want. We chose compassionate care to ease
Henry's pain and suffering. We transitioned home and packed a
lot of living into his 291 days with us. It came on suddenly one
morning. It was clear that Henry's body was beginning to
shut down. While we knew that Henry would not likely rebound
from this, I didn't comprehend that he was dying. I was sure
I'd have more time with my boy. I held Henry in my arms and was
completely overcome by despair. I was terrified to think about
his last breath--what he could hear, what he was feeling and
thinking--my perfect baby boy. In the early morning, his
breathing began to change. The three of us huddled closely.
Henry Robert Klos gently slipped away before the sun rose on
January 18, 2015. The end of our son's life was full of peace. We
were engulfed in love. The sorrow was raw, the disbelief
blinding. How could the sun rise and set? How could people laugh?
How could the world carry on when my baby had just died? I
couldn't help Henry. Somehow I let this happen to him. There is
no healing after the loss of a child. It feels horrible to feel
horrible. Sometimes I feel like my chest will break open. I will
see that, in fact, my heart is in a million pieces. Yet it
feels horrible to feel okay. In those minutes where I feel
alright, maybe even when I can laugh or sing, I feel guilty. I
struggle with my lack of confidence, my lost optimism. I
struggle with social anxiety, guilt, and despair that
resurfaces with no warning and how hard it hits. Our social
worker in our palliative care group told me this--think about
each emotion as a tangible item, a ball for example. Hold the
ball in front of you. Acknowledge it. Assess why you
feel that emotion. Ask yourself if it's real or perceived. Sit
with that ball, that feeling, for as long as you need. When
you're finished, put it down and move on. This helps when I
experience regret, anger, jealousy or relief. If I hold
those emotions in front of me, they become separate. My
feelings are not me. I was pregnant when Henry died. I
spent the four months between Henry's death and Truman's birth
in denial and sorrow. We had little time to grieve. Truman's
birth was overwhelmingly beautiful. The love we felt
paired with the relief and joy that he was healthy was so pure.
Because of these life-changing experiences, we now understand
that this is life--experiencing joy and sorrow at the same time.
Most days my grief feels more manageable than in the
beginning. The waves still crash, but the storms seem
further apart. Time doesn't heal, but it helps. Connecting
deeply with others is most important to me now. Life is too
short for small talk. I want to know why you hurt, who you've
lost, and what you think happens when we die. I want to know your
darkness so I can appreciate your light. Now I write to Henry
and it makes me feel close to him. It is one of the only ways
I can parent my son. As Phoebe and Truman get older, I hope
they read my blog so they can know their brother. More than
anything, I'm terrified that Henry will be forgotten. Not
mentioning him or including him in our family feels hurtful and
wrong. Recognizing the hugs that Henry sends us from the other
side always helps to bring peace to my aching heart. Giving back
allows us to feel closer to him. We honor Henry by sharing his
legacy with the world. We honor him in small ways, too. I talk
to him. I make time to be his mom. Whether it's writing to him
or connecting to another loss mom. I pay attention to how I
live my life so I can make him proud. I frequently feel Henry
with me. I am confident there is only a thin veil that separates
us. Though we will grieve Henry for the rest of our lives, I
believe he will always grace us with his precious hugs. His soul
is gentle. His spirit brave and fierce. Henry is my hero.