Graham’s Foundation parent mentor, Tracy, shares the first of her two part post. Be sure to read the second part of her post.
When I was admitted to the hospital at 23 weeks and 5 days into my pregnancy, the nurse asked me if I had ever heard of preeclampsia. I looked at him with a blank stare. When he continued to say you are most likely going to have this baby tonight, I looked at him in utter confusion. Five days later, at 24 weeks, 5 days, my daughter was born weighing 14 oz, and at that moment, I took the biggest breath of my life.
This was a breath so big, I didn’t even know it was possible to fill my whole body with that much air. The breath filled every single bronchiole and alveoli in my lungs. It filled my whole body, making my body tense, making me feel heavy with all the air.
I would be holding this breath for years to come.
I didn’t realize until recently that I have been walking around for years in this tense state of breath holding and releasing. After a long time of working through this, I have found this to be the best explanation of my experience since my daughter was born. As I looked back, I realized my breath has fluctuated in the five years my family, my daughter, and myself have been traveling the road of what comes when your daughter is born a micro-preemie.
It has never been as big and full of air as when she was born, but I still hold in my body, some of that air from that enormous breath at the beginning. Holding this breath with every bit of news, update, backtrack, evaluation, doctor’s appointments and more. Then releasing air and feeling my body get lighter with every goal, accomplishment, and success.
It would continue, like this, holding my breath in as I think, “will she survive long enough to know how much I love her? Will she ever get off the ventilator? How much damage would come to her eyes from the ROP surgery?”
Breath in, hold.
“Would she sit up, walk, have CP, smile, talk, have a conversation, understand what I am saying, have friends, be able to be in a regular classroom, EAT?! For pete’s sake, will my child ever eat?? On her own?!”
Shoulder tightening, throat clenching, head pounding- breathe in.
Then the appreciation of the little things started to happen. When we left the NICU! Ahhh….Big breath out. When she started singing for the first time, when she walked on her own, when the meltdowns started to slow down. I could feel how less tense my body would be from letting go of that worried, full of fear breath.
Re-hospitalization- a big breath in! When we make it to a milestone only to learn there is a new challenge, when we discover a great new therapist only to discover that insurance has denied the claim and the bill comes next. I breathe in a little more into that breath and my body tenses up again. I would breathe in as other full term moms talked about their experiences that I missed out on having a preemie. Then I would release the air again when I observed her for the first time being able to pull herself up on the pull up bar in gymnastics class and hang by her legs. My body relaxed and breathes out on the day she has a great time playing with another child at the playground or noticing the biggest smile on her face in ballet even though she may be doing completely different steps than everyone else in the class. The day she turned to me after months and years of potty training and says, “I put two solid wastes in the toilet!”- I breathe out in gulps of laughter because I have no idea where she has learned to call poop solid waste.
I breathe out with mindful love when she touches my cheek, smells me, tells me she loves me, and that I always smell like roses. I notice myself breathing in, tensing at IEP meeting and playdates. I breathe out with complete amazement that it doesn’t seem to matter how good or talented she is at an activity, she seems to be the one that is having the best time. Her bravery and strength has not only helped her, but helped me.
It is no doubt a result of some of what she has gone through since birth.
On a family trip to Disney World recently, she couldn’t wait to ride every roller coaster she was tall enough to ride. I feel my body release and I let a little bit of that air go every time I see her happy, see her conquer, see her love, and see her enjoy.
I have read so many articles and blog posts from parents about their trauma, and “post neonatal traumatic stress disorder” stemming from their NICU experience. Just from personal experience, I can’t say I have had a PTSD diagnosis- but I can say having a child that from day one needs medical intervention and answers are so unclear can have an obvious effect on a person.
I realized I need to let some of the fear, anger, and worry go.
I needed to let this breath holding go.