It’s early on a cold Friday morning, we’re loading up the car to drive two and a half hours to an out-of-state hospital. It’s one of the top children’s hospitals in the country. It’s a place I never dreamed we’d need.
It’s been almost four-and-a-half years since we walked out of a three-month, fairly uneventful, NICU stay. My heart wanted to believe we had fought prematurity and won, but my brain knew it would be a longer battle. I promised myself by kindergarten no one would know what she had been through – what my body had put her through – but the fight was only just beginning.
They say “fight like a preemie.” To those who have been there, you know what that means. For those who haven’t, it’s something I like to equate to having a step beyond a strong-willed child. In our house, we call it a survivor-willed child. Since well before her birth, all she has known is to fight, to fight hard – it’s how she’s wired. She’s wired to survive and to overcome any obstacle placed in her way.
For us, fighting like a preemie has meant advocating. Advocating for the things unseen. The struggles that her early birth left her with, the trauma of her birth, the anxiety that fills her mind, the sleep that won’t come without tons of support.
It takes sacrifices to fight like a preemie. We spend two hours a week in therapy sessions and another thirty minutes in a swim class, because it’s where she excels amidst the hard things she works on each week. Add in the thirty-minute drives each way to each appointment and that’s almost six hours plus preschool every week! But, we wouldn’t trade it for anything. Those sessions have helped her come so far.
There’s another piece of fighting like a preemie in our world, and that’s reaching out a hand to help others, just as others walked through our journey with us. There’s healing in sharing, and often we talk with parents just beginning their own journey of prematurity. We encourage them and say, “We’ve been there!” There’s power in the commonality of the experience.
If you’re finding yourself fighting like a preemie, for your preemie, don’t lose hope. Keep seeking answers, even when it seems no one will hear you, that no one believes prematurity lasts beyond those NICU doors. Keep advocating, keep connecting, find community and most of all, don’t lose your family. Find what works for your individual family, even if its what the world says doesn’t.
As we sit in multiple appointments on that Friday morning, I ask if we’ll ever know all the reasons for her different struggles, and each time the doctors give a half smile and whisper, “Prematurity.” It’s the reason we fight, it’s the reason we fight for others.
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