No child should experience what your child is right now. No parent should experience what you are right now. No parent should witness their child’s suffering. Yet here you are. Here we are.
Everything has changed. Forever. That’s dramatic. But that doesn’t make it any less real.
I know what it is like to have the rug pulled out from under you. To have all of your plans and dreams permanently shattered right before your eyes. Let no one tell you different. That is what has happened to you and to your baby.
Having walked- no, dragged my ass through a similar road- I wish I could take your pain from you. Take your hurt away. Make your baby better. But, I cannot. And neither can you, and I know that that is the hardest part. The helplessness. The fear that smells like hospital soap and tastes like bile and rage.
This sucks. Sucks. It sucks so bad. Everything that you are feeling is normal. And what you and your baby are experiencing right now is not normal. It is OK to grieve that. You have to grieve it.
I know that there are people in your life who are trying to be helpful. They are filling your Facebook feed and texting you with messages of hope and “this too shall pass,” and “you’re almost there,” or “I can’t imagine,” or the worst one, “God doesn’t give us more than we can handle.” Bullshit. I call uncle. God has nothing to do with this and everything to do with carrying you through it.
They mean well. They’re still good people. But you are in a different category now. You are not like them. You never will be again. What is happening to you, to your child, to your family, it is changing you. It is making you into a different person from the inside out. You are in the beginning stages of your “new normal” and you will not go back to who you were before. That person is gone.
Your new normal involves an entire team of people who were strangers to you just days ago. They are your family, now, your tribe. You believe in them. You trust them in ways you didn’t know were possible. You know things you shouldn’t know. Medical terms. Diagnoses. Prognoses. Some days, you will barely make it out of bed because the weight of your new life is too much. Other times, a ray of hope will worm its way into your heart and you will smile again. A real smile. Not a fake smile like the one you wear for your mother-in-law or your co-workers. Joy is not gone forever. It just looks different than it did before. And in many ways, it’s better. More pure.
I will not tell you that when this is over, you will look back on this time and feel awash with gratitude for all you have been through. Because this will never be over. And I know that there is nothing you wouldn’t do to take this from your child, to swallow it whole and let it be you instead. It is jarring that your greatest lessons as a parent have come to you through your child’s trauma. Something inside you has been broken.
It is OK.
Broken things can still be useful and beautiful. The crack makes them beautiful.
Continue to let people help you. Post on social media, share or not, rage, sleep, drink, hold each other. Do what you have to do. Lean into your fear, your hurt, your anger. It is healing. Lean into the prayers of others and let them hold you. We are carrying you. I promise.
I am thinking of you. I am praying for you. Tomorrow, you will get up and do it all again.
You can do this. You have to do this. You will do this.