I don't think anyone ever considers that having a baby will bring about the most excruciating experiences in life. But for some of us, it does. For me, parenthood is marred with a deep seeded sorrow that will never go away. Some days that sorrow is overwhelmingly all consuming. Some days it's distant. Most days it's both.
Today is one of the harder days.
I thought that as time passed, leaving Avelyn and Sean to return to work would get easier.
It hasn’t. To walk out of her hospital room is agonizing. Getting to the car before I have a meltdown is a challenge I have yet to accomplish. Driving out of Nashville and 5 hours away from my extremely ill baby is physically torturous.
I know some people think I am crazy for leaving when she is still so sick. And while you would never say it to my face, I know many mothers are likely thinking they would figure out a way, whatever it took, to stay with their child.
I get it. It’s easy to judge when you don’t have a clue. It’s easy to say, you’d find a way when you’ve never had to. I know I likely sound dramatic and aggressive but I don’t mean to. I also do not mean for this to be some insinuated plea for help or attention.
I write this because other heart moms have asked me to share our story- the good, the bad, and the ugly. Me having to return to work is part of that story. So is feeling judged for not being at my baby's bedside. Then again, bearing the weight of judgment is but minuscule compared to the arduous load of my child's illness.
Being the parent to a critically ill child irrevocably changes your very being. How could it not? I must live knowing I’ve made decisions that have caused my child pain and suffering on a scale that I will never be able to fully comprehend. And though each day I thank God for giving my child the opportunity of life, my next breath carries prayers of forgiveness for all we've put her through.
Given most people tend to value duration of life above all else, I can see how this too may sound crazy.
But there comes a time when you may pray for the suffering and pain to subside, whether that means you get to keep your loved one or not. In that moment, you know in your heart that death isn't the worst possible outcome.
Reaching that reality is peaceful, numbing, and completely sickening. Every sense is heightened, yet so dulled that you can't process your environment. Each moment lasts forever, but is gone is the blink of an eye. Reality has never felt more absolute and yet so distant.
The memories of our worst times are etched into my brain too sharply. Sometimes I wonder if they really happened. Other times I wonder how I am ever able to think of anything else. Not infrequently, the most haunting moments visit me in my sleep or creep into my thoughts completely unprovoked.
The PTSD is real. I am not ashamed to admit it.
I am not some super human that people seem to think I am. I often don't know what I am doing or how I'll get through tomorrow. I don’t have some vast well of strength to draw from. I don’t have some incredible gift of insight or understanding. I worry constantly. I question everything.
I get angry at the lack of answers and the uncertainty surrounding my daughter's life, but that takes a lot effort and energy that I can’t afford to expend.
I guess what I am trying to say is, I am tired of people assuming there’s something special about me and my ability cope with Avelyn’s illness. I’ve started to feel that by allowing people to go on perceiving I have all of this figured out, I’m sending the wrong message. It belittles other parents’ journeys with critically ill children and that’s the last thing I want to do.
Every parent in situations similar to ours must cope differently. There’s no wrong way to cope, though I admit some coping mechanisms are more productive than others.
The only advice I have for families entering difficult situations like ours is to not let the darkness keep you from loving and embracing those around you. Don’t waste too much energy being angry. Life is draining enough as is. Put your effort into trying your damnedest to be present in the moment, no matter how painful. And sometimes, it helps to just let the tears flow.
I feel the photos below help tell our story better than my words ever could. The first is of my and my girl the morning before I had to leave this week.
The second is when I had to stop for gas. I was using my phone as a mirror to wipe my tears (a tear streaked face draws more attention than I wished to deal with). I accidently snapped this photo. I don't know why, but couldn't bring myself to delete it.