I know everything within you wants to protect your child. That’s a parent’s way, and when life serves up something that you cannot control, well, it’s just not fair. And it’s not easy. And frankly, it just sucks. Give yourself permission to feel that.
There is no manual for these things. Nothing that can truly prepare you for the weight of it all. Nothing that can prepare you for picture perfect dreams falling apart.
I know this is scary. It’s okay that your world is feeling a little crumbly. The day that the words fell off the lips of the white coat, they felt rehearsed and a little sterile. Those lips have spoken words like these a million times over, but when it’s spoken about your child, time stands still.
It feels a lot like a punch in the gut. Things like this happen to people, but only to other people. Not you. Not yours. Not your baby. It’s like all the commercials you’ve seen before. All the pleas for funding for research. You’ve even donated your $1 a time or two – all for sweet, little, nameless faces that could never be yours.
Except now, it’s a little too close to home.
Here’s what I’m not going to tell you …
I’m not going to tell you to stay strong. I’m not going to tell you to trust. I’m not going to tell you to wipe your tears, pull your britches up and keep the faith. I’m not going to tell you any “at least.” I’ve been there and I know that helps no one. Even when trusting and bravery and strength are the answers, they are answers you need to discover on your own and when you’re ready.
I’m not going to tell you to pray harder. I’m not going to tell you why this is happening to you. There are far too many people out there trying to explain the impossible in a world that is broken, when sometimes there are no answers. There may be answers for the “hows,” but the “whys” are sometimes too profound for our finite minds.
You need to know this, and I hope you already do, but I’ll say it anyway.
This is not punishment. This is not something you did. This is not a consequence for bad actions. Do not blame yourself. Do not carry that. Do not hang your head in shame or guilt. Do not think of that baby and think of all the things you could have, would have, should have done to prevent this – all the things you could have done to stop the pain. All the things you wish were different and then maybe life would be just right.
Don’t let your heart be weighed down by the heavy burdens of others. Poor advice. Well-meaning insults and cutting words. Remember that we’re all learning and navigating this strange, unpredictable world. Allow yourself to let those words fall as easily as you can. I know it’s hard.
Here’s the big thing – the big thing to hang your hat on when the doctor says those words. When the details play over and over and over in your mind for days, weeks, even years to come. Here is what I want you to tell yourself to lift yourself out of the deep pit of sorrow and guilt and anger. Here is where I want you to sit and then stand.
A diagnosis defines a lot of things, but it doesn't define love.
Love until your heart bursts. Love until you’ve run dry. Love for every day you are given and love even if they are no longer in your arms.
You are brave. You are strong. You are so loved … And so is that child.
I know this is hard, hard, hard. I know.
But your love is bigger than any diagnosis and that I can promise you.
A version of this post originally appeared on Scribbles & Crumbs.
Lexi Behrndt is a mother of two boys, one in heaven. She works as a communications director and freelance writer in Florida and writes a blog called Scribbles and Crumbs. Find her on Facebook.
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