Today kicks off Prematurity Awareness Month. This year, I was going to hide out and pretend the observance wasn’t happening. I don’t feel like celebrating prematurity nor discussing it much. We live prematurity. Every. Single. Day.
Besides, what would I say? Would I rehash the story of her early arrival? Would I write again about our unceremonious introduction? Should I cover losses or how we’re not supposed to be here? Maybe, I would mention how it feels four years later?
My struggles that began with her extremely premature delivery are not a secret. I’ve written about them at great length.
However, I haven’t written enough about the things for which I’m grateful. That is what I choose to write about today in observance of the first day of Prematurity Awareness Month.
Here it is, in no particular order, the list of what I’m thankful for in my prematurity journey:
1)The nurses. They picked up my pieces and held me together while they saved Charlie’s life. They stood beside me and battled insurance over automatic denials. They continue to guide me and hold my hand. I would be lost on this journey without them.
2)My husband. He does his best to support my needs, hopes, and dreams. He’s patient and kind. We laugh often as we jest with each other and share bizarre inside jokes. He is my partner on this ride.
3)My Charlie Bear. I am truly honored to be her parent. The resilience, bravery, persistence, audacity, and exuberance she displays every day amazes me. She shows me a different way of seeing things and challenges me to be better.
4)My friends. Some people are fortunate to have one good friend. I’m privileged enough to have a few. In too many ways to list, they provide love and support throughout this journey. They are the reason I’ve made it this far.
5)Other preemie mothers. There are days (when faced with impossible choices, heartbreak, or exhaustion) I feel like giving up and feel myself start to say, “I can’t do this. This is too hard.” Other preemie mothers jump in and say, “I understand. Me too.” For some reason, commiseration provides solace and much needed strength as I stumble through the rocky spots. With them, I know I’m not alone.
6)Ordinary moments. From twenty four weeks into my pregnancy onward, few things about our journey have been ordinary. However, we do have short lived moments in which we aren’t begging her to eat, sitting in a waiting room, comforting a sensory disturbance, battling insurance, quieting a feeding pump alarm, or consulting medical professionals. During these brief moments, I am able to forget about the complications in our lives. Whether it’s simply playing in a park or grocery shopping, I treasure every bit of ordinary.
7)Each day. My pregnancy almost killed both of us. I’m grateful to be here. I’m grateful she’s here. More importantly, no matter how bad a day turns out, we get to try again with each new day.
8)The children’s hospital. The children’s hospital provides hope, support, understanding, encouragement, answers, and compassion. Everyone there, from the doctors to the Childlife specialists, provides tools for survival. I hate that we need it and we spend so much time at the hospital. But, I’m glad it’s there.
9)March of Dimes. Advances made by research funded by March of Dimes allowed Charlie to survive. The March of Dimes NICU Family Support program held my hand as I navigated the NICU.
10)Music. My last night of pregnancy outside of the hospital was spent at a Charlie Hunter show. When I realized Charlie was arriving way before her due date, I played my favorite music for her over several nights. The first time I held Charlie, I breathed out a Matisyahu song. An endless rotation of Dispatch and Chadwick Stokes soothes and comforts Charlie when she needs it and has become a driving staple. If I’m seeking peace or fortitude, I often find it through music. Our story has a soundtrack. Music provides comfort, solace, strength, and courage when needed in our journey.
11)We didn’t fall apart. Charlie has been every bit of amazing through out this journey. It’s me I worry about falling apart. People often refer to the NICU as a roller coaster ride of emotions. Our ride never really ended. Each day, we navigate our way through prematurity’s challenges, losses, and victories. Over time, the relentless ride is enough to break anyone. I’ve come close to cracking but have managed to keep it together thus far. For that, I am thankful.
Prematurity is a journey of a thousand losses. Just when it seems like I’ve learned to cope with my most recent loss, another one sneaks up on me. The journey is slow, tough, tedious, and often miserable. Nevertheless, I am grateful and love every bit of it. It is our story. We are lucky to have it. Despite it’s brutal nature, there is much to appreciate. I don’t feel victorious. But, I have enough.
I love this post! I truly believe that the people that are in our lives post NICU are how we survive this journey. Glad you have your tribe!
I always say our NICU journey didn't end... it just changed course. And it's not an easy ride in any sense of the word. You're doing it. Charlie is doing it. Go you!
Rebecca- I so wish I could hug you right now. You have had quite a ride and it not over but I hope you know that we will always be here for you and that amazing girl of yours. You go above and beyond to make sure Charlie has ever opportunity imaginable. You are one strong momma even when you don't always feel like it. Thank you for sharing entrusting us with yours and Charlie journey. I have enjoyed watching Charlie grow up and I love that smile of hers!
I really commend you on your list of things your thankful for- I think it would take me awhile to come up with that many. Thank you for being here, for sharing, for all you do for the children's hospital, your constant advocacy for more help for children like Charlie. She is amazing, and so are you. Victory is overrated, surviving what should have killed you, now that's something to brag about.
Love and Hugs
Beautiful picture and beautiful post. Thank you for sharing!
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