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To the mama out there learning your baby’s future will be different than you envisioned…

Being a mom is a tough job, even scary at times, but the love for our children makes it all worthwhile. This Mother’s Day, one veteran heart mom has a message for those newly taking on the role.

I’ve been in your shoes. Sitting in a similar, hard-backed chair, hunched over my lap, clutching tissues, feeling out of my body as the person across from me delivered a diagnosis for my baby that changed everything. Everything. 

I recall sobbing with hot, fat tears soaking my shirt when I didn’t think there were any tears left. 

I remember reading and reading and coming back to the same conclusion over and over. No one can predict his future. No one can promise that his journey will be like any other child’s with this diagnosis. There is no reassurance. There is only wait and see.

I remember marveling over his features, his sighs, the way his eyelashes rested against his cheeks with that new-baby-exhausted-bliss, only to be snapped back to reality as fear sabotaged the moment and jerked my thoughts back to the unknown. 

There was a period of time that I woke up every morning and went to bed every night scared of what was to come. This same fear peppered my thoughts during waking hours and interrupted my restless sleep.

Then one day, his smile and his giggle were strong enough to keep my fears at bay. His every movement forward was cause for celebration. I realized the scales were tipping and that much of my day was spent focused on him and what he was capable of, no longer overpowered by fear of the future. 

I want you to know you won’t always feel this way. You won’t always be ruled by fear. You won’t always feel so overwhelmed you can’t breathe or focus. Time passes and you find that your baby has the beautiful, magical ability to keep moving forward despite his unique journey. You find yourself moving right along with him, seeking progress and celebration to help drive down that fear and keep it at bay. It lurks and when concerns arise it rears its ugly head, but by that time you will have found that you have so much LIFE to celebrate that fear occupies a much smaller space.

Hang in there, mama. You will find yourself wanting to rush these days, to put distance between yourself and these terrifying moments. Look for the joy in each day – your baby will ensure that you do. 

This isn’t the path you envisioned, but you will find so many blessings along your way. You will find strength you didn’t know you possessed. You can do this. You already are. You will pick yourself up off of the floor and shepherd him through this journey. You were made for this, mama. 


Laura Kohus lives in Cincinnati, Ohio with her husband, Matthew, and their 3 children, William, Henry, and Katie. Henry was born with tetralogy of Fallot in 2015. Laura is a pediatric occupational therapist and enjoys writing as an outlet for the emotions that accompany being a heart mom.

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