Love, Carolyn

“Dear NICU Mama, I cannot wait to see the ways you will advocate this year.

I know you were thrust into a world where you often know your child better than medical professionals do, and I know that it’s frustrating. But I can’t wait to see the way that you stand up for your child and their needs. I can’t wait to see the way you raise your voice as your little one learns theirs.

I know you did not expect for your baby’s medical journey to extend long beyond a stay in the NICU, and you’re learning terms like “medically complex” as you navigate through an entirely new medical team, but I cannot wait to see the ways you will get stronger through their diagnosis. What one day may have broken you down will raise you up the next as you learn to be the best caregiver for your sweet baby.

I know this is not what you expected, but know how proud of you I am that you have taken on this new role. Not just as mom but as the best advocate your child will ever have. 

You got this, mama.
Love,
Carolyn

More of Carolyn + Her Son’s NICU Journey:

“My son had an 83 day NICU stay, and while in the NICU, was diagnosed with a genetic syndrome called Prader-Willi. This news originally crushed us, but quickly, I have learned that I get stronger every day because of him. His diagnosis has pushed me to advocate HARD and tell medical professionals what they can and cannot do, spending hours upon hours on the phone with insurance companies and pharmacies, standing up for my sweet boy when he can’t stand up for himself. My letter is for all the moms whose medical journeys extend long beyond their NICU stay.”