A letter to the mom who just got hard news

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Most likely you were sitting in some sort of medical facility with a doctor or professional in the field. Maybe you instinctively grabbed for something– your growing belly, your spouse’s hand, the edge of the chair– holding on tightly in hopes the news you sense is coming might be staved off if you just hang on one more moment.

You listen intently to the doctor say the words that upend every aspect of your life. It’s matter of fact, unattached, as though they’re rattling off items on a menu. Your pain, your searing pain that makes you want to scream, feels generic. 

If there was a physical picture to how you felt inside, it would be something similar to laying in a puddle of tears, freezing cold, lifeless, unable to move. You’re held down by the weight of the diagnosis, by the heaviness of the new reality, unable to sit up.

I’ve been there too, mama. I’ll never forget the room, I’ll never forget the words. I’ll never forget the pain and agony when we first heard about Jaxlee’s Cerebral Palsy. I could barely catch my breath as I watched every moment of hope and expectation I had for my baby, for my role as a mom, for birthday parties and kindergarten and everything in between, leave my life with one cold, routine explanation from our doctor. 

That moment changed my life forever as it did for you as well. 

After the doctor left, when the news started to settle, I was left with my own thoughts, desperate to figure out answers in hopes that it will somehow make it better. 

First, I was fixated on the past. Was it something I did? Was it my fault? What could I have done differently? How did this happen? 

Then I started to think about the future. Bringing her home. Learning a new way of life. Will I ever feel happiness again? Will I be able to smile or laugh? Will life ever be desirable again? Will the pain go away or at least be less?

And then I took a step and I learned how to feed her in the NICU. I took another step and I learned about MRIs, Swallow Studies, and EEGs. Then I took another step and I learned about opportunities with specialists that could suggest the best form of therapy and services to aid in her development. Some days there was more hope than others. But we kept going. 

Each day was an accomplishment for the three of us. Jonny and I learning how to parent a child with special needs, and Jaxlee learning how to grow and develop despite all the odds. 

I’ve been a mom for six years now. I’ve had six years to see all those questions I had about our future come to fruition. Jaxlee brings SO MUCH joy to our lives. Jonny and I watch with deep pride at every obstacle she overcomes, and we are blessed by the way her fearless nature inspires other people. 

But in that quiet moment in the doctor’s office, life felt like it could never be good again. 

So whether you just found out a diagnosis for your baby that worries or scares you, I see you. The initial moment feels like you will never experience joy again.

But you will see, feel, taste, and experience joy, even if it looks different than what you expected.

The best advice I ever received as an expecting first time mama was this: “Don’t ever compare yourself to other mamas. God did not choose them to be the mama of your child, He chose you. He chose you because you already have exactly everything your baby/child needs that no one besides you can give them.” 

When I held Jaxlee in my arms in the hospital room, I was overwhelmed. But I remembered this statement and I knew that God chose me to be her mother. Who I am and what I’ve experienced has led me to this moment. God chose me to be her mother because I’m the only one who can give her exactly what she needs. I began to feel empowered. There was a HUGE learning curve, but here I am, six years later, and I can see how much Jaxlee needed me– and how much I needed her. 

Motherhood is so much more complex than what we grow up seeing. But it’s also more rich and deep and beautiful, and I would say BECAUSE of the pain so many of us have experienced on the journey of motherhood.

For some of you, your pain includes carrying a baby that didn’t make it full term.  Maybe you brought life to the world and lovingly gave the child to another mother to raise. Perhaps you were chosen to nurture and love a child that has physical, mental and emotional challenges beyond what you could ever fathom.  

No matter where you find yourself today, my desire is to offer you hope in knowing God doesn’t make mistakes. You are the right mother for this moment, even if it feels like you’re bearing more weight than you can handle. 

Someone told me just this last week: God gives his strongest soldiers the toughest battles. 

Whether you feel strong or completely broken, God will give you the strength and wisdom to walk your journey with hope and  joy if you allow him in to those hospital rooms, to those dark places in your mind, and to the moments of loss. 

You have what it takes, mama. And yes, it will be good again. 

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  1. Sharon Barton says:

    That was beautiful Emily! I am sure that your genuine words of experience will bless others. Thank you for inspiring all those around you and being the best mama for my Granddaughter!
    Love you!

  2. Sharon Barton says:

    Thank you for your beautiful post. Your genuine words of experience will bless others. You are such an inspiration to all of those around you. You are the best mama to my Granddaughter!
    Love you Ems!!

  3. Brenda Colgate says:

    Beautiful writing Emily. I feel you pain, joy, worry, anticipation and strength from reading this. Thank you for sharing your story, your life and Jaxlee’s journey.

    xo Brenda

  4. […] Braedy has helped me bridge the gap between being a “special needs mom” and the mother of a typically developing child. Before Braedy, I felt isolated around moms other than a special needs mom because no one else understood my hardships and trials. (If you’re a mama who just got hard news about your child or pregnancy, read this.) […]

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