Being a parent is hard.
Being a parent to a heart warrior is terrifying. Crippling. Depressing. Paralyzing. Frightening.
I could come up with a plethora of adjectives that describe how scary it is to be a heart parent but I’m not going to.
We already know them. We live them.
Every single day we live with the fear of our children suddenly going into heart failure. We live with the fear that our children and their weak immune systems are going to land back in the hospital after catching the flu from another kid.
Most of the time we don’t even feel like we are breathing. Since you first heard the diagnosis you haven’t been able to catch your breath.
If you are just getting ready to have your heart baby, you are probably wondering if you should even have a baby shower, or set up a nursery. (Which by the way, you absolutely still should.) Your fear is that you won’t even have a baby to bring home.
If you are gearing up for your Glenn or Fontan, you are probably worried that these last six months or two years are all you’re going to get with your baby and you’re trying to cherish it as much as you can while you can.
If you are getting ready for your baby’s heart transplant, you are fearing your child’s body will reject the new heart.
Maybe you’re child is doing fantastic but you still worry that they are pushing themselves a little too hard on the playground at school.
These fears are real. These fears tear you down and kick you in the gut. These fears control you.
It gets frustrating when people tell you to “stay positive” because, how the heck are you supposed to do that?
Our friends and family mean well when they say it, of course, but unless they have a heart baby themselves, they most likely don’t know what it’s like to have your hand shake over that signature line on the Informed Consent paper as you literally sign your life away through the tears streaming down your face.
They don’t understand what it’s like to be given odds and statistics of your unborn baby making it to a certain age.
So, the ultimate question…
How the heck are we supposed to stay hopeful? Optimistic? Positive?
It’s not a one size fits all answer for everyone. But we have a one size fits all God that loves us. He will lift us up when we feel like we’re drowning.
I know because that’s exactly what He did for me.
When my son went into cardiac arrest, I was angry. Then when he went into arrest the second time a week later, I was ready to turn my back on God. I couldn’t understand how He would allow this to happen but when my son turned his recovery around and was thriving, I knew I had made a mistake in being angry with God.
He called us to be the parents to these warriors. He knew that us as mere humans wouldn’t be able to handle it, so He equipped us with pieces of Him to conquer those fears. He has given us everything we need to be strong and to be the mothers, fathers, heart parents that He called us to be.
I get it. It sucks. It’s hard. It’s a crap ton of responsibility that we didn’t ask for.
But I know that despite the fear and worrying and pain that goes along with this life, it’s a beautiful life.
When I think about my son years from now, I don’t want him to remember a childhood filled with fear. I don’t want him to remember a depressed mother that wouldn’t let him be a kid because she was too scared. I don’t want him to feel like he is the cause of my pain and worry and carry that burden. I don’t want him to walk around in his own fear that he is a ticking time bomb.
I want him to be full of life. I want him to feel no different than the other kids on the playground.
So after giving my fears to God, (because if I have time to worry then I have time to pray), that’s what drives me to remain positive. Seeing my son have a full, fearless childhood. The only way he is going to have that is if I show him how to be positive no matter the trials you are facing.
I want to give him the absolute best quality of life, no matter how long he is here on Earth, and give him a life full of fun and laughter and memories.
It’s hard, oh please believe I know. Letting go of that fear is no easy task and believe me when I tell you this doesn’t mean that I’m not still scared about our upcoming Fontan and what lies beyond. The day is coming a lot faster than I’d like but that fear is not going to get in the way of my son’s childhood.
I won’t let it.
So stay positive. Have faith. And most importantly, pray.