Creating a life and ensuring survival is hard. It’s a journey fraught with waking up multiple times at night, feeding, diapers, teething, and soothing. When you have a baby with extra demands, it impacts parents immeasurably and exponentially more. Oxygen tanks, chords, tests, surgeries, bad news, disappointments, obliteration of expectations, and fear compound. A responsibility that is hard in the best of circumstances made significantly more challenging. Taking nothing away from the love and joy of bringing life into the world, it’s essential to acknowledge the space between “normal” and the reality faced when babies have significant needs.
Our first child was typical. As first time parents, we were stressed, afraid she would stop breathing at night, learning as we went. Our second child was diagnosed at birth with Down syndrome. This came with weeks in the NICU, oxygen tanks with short cords, feeding challenges, developmental delays, and open heart surgery at six months to name a few. Our son is the light of our world. We did it all without hesitation and with guilt for our frustration, sadness, and fear. It shook our world challenging and testing us in many ways. We made it.
Now, our son is in all the therapies, has introduced us to a whole world we didn’t know existed, and brings nothing but joy. We never differentiated or acknowledged the differences between him and our first born. This, in hindsight, was probably due to the amount of energy it took to get through, feeling guilty to acknowledge he is any different than anyone else, and focusing on how much we love him.
On Tuesday 8/22/23, we had our third child. She is healthy (and beautiful) on all counts. We had a moment where we were struck by how “easy” she is compared to our son. It took the birth of a whole new human being for us to acknowledge fully the challenges we navigated. This realization granted us a unique perspective. I’m writing this as a letter to those who had or children who spent time in the NICU, that weren’t able to hold them after birth because they were whisked away, waited months until their baby could sleep on their chest, and did everything without hesitation through challenging times.
If there is nothing to compare to after that experience, it leaves a weight on your heart that is impossible to name. It’s hard, very clearly hard. Everyone who knows what you went through prayed for, supported, and encouraged. Yet, when you’re in it there’s no room for acknowledgment and appreciation. I want you to fully appreciate what you have been through. Have pride in the character displayed, support from friends and family, and be encouraged that you endured a strenuous thing many have not. This is not to boost ego, it’s to appreciate what you’re made of. Parenting is hard enough. You were dealt an incredibly challenging hand and came out on top. That should be celebrated and appreciated—most importantly by you.
You did it because you were called to it—not by choice—by need. It shaped and altered you forever. Honor that. Hold dear to the lessons learned through tribulation. Listen to the song that helped you through with new ears. Absorb reality empowered by the experience. Love yourself more for the journey.
