I still look at my daughter's baby footprints. Aleea was born on February 19, 1999 and died in my arms on February 23, 1999. Those four days are ingrained in my body, mind and soul. How she felt, her scent, her silence. I never heard my baby girl cry.
I met Amanda Knight on Linkedin less than a year ago. She bravely shared the story of her daughter, Sadie. Sadie died two days before her first birthday, another baby who spent much of her life in a Neonatal Intensive Care Unit (NICU). Another mommy who missed her baby girl so very much.
Sadie was a twin. Her sister survived. This complexity of love and loss is one I've never asked Amanda about, and not sure I ever will. I can only have empathy, knowing how I felt when my son was born after Aleea died. Finn lived. Part of me thought he may leave me too.
Virtually meeting Amanda was the beginning of my actual grief work. Grief that I'd sat with for 22 years. ____________________________________________________________________________
I was sick my entire pregnacny with Aleea. At age 22 and unmarried, much of my complaints of pain and sense of doom were dismissed to anxiety and hormones. I recall few moments of peace while pregnant, sometimes the pain would ease and I'd lay in bed and watch the show Golden Girls. I'd giggle a lot and pretended that my baby was laughing too. Sometimes I'd get hiccups or gas and I'd convince myself that she was moving. After now having had a healthy pregnancy, I can say with confidence that Aleea never moved, or if she did, I didn't feel it.
My concerns for Aleea's wellbeing were dismissed my entire pregnancy. I was told I was worried, a young mom, attention seeking, anxious. One person asked if I even really wanted the baby growing inside of me. I teetered between deeply depressed to utterly confused. Was all of this in my head?
By 35 weeks pregnant, a nurse in my Obstetric office finally asked the right questions, at the right time, and referred me for advanced testing. My labor was induced later that day. I was told, "everything is fine, we just have indication that baby will do better outside the womb, so we are going to deliver a bit early."
I don't think they were lying. I honestly think they had no idea that a very sick baby had been fighting for her life since the moment she was conceived.
Aleea was taken immediately from me at birth. I remember saying, "please let me see my baby before she dies". A breathing tube was put in her at bedside. She never moved and never made a sound. The doctor was in more shock than me. She could not even make eye contact.
Four days later, with understanding that Aleea was "not compatable" with life, I made the decision to remove the life support. I was prepared that she would likely only take a few breaths before dying. Aleea lived in my arms for 7 hours, then peacefully stopped her efforts.
Finding out a few months later that Aleea had an extremely rare recessive genetic disorder, Gaucher's Disease Type 2, was an answer, but all it did was bring more questions, more pain, and belief that I was never going to have a living child. That I was defective.
I would go to therapy. Sit there. Pay. Go home. The act of showing up kept me from dipping deeper into silent depression, but I never made any progress.
I went to Red Cross Certified Nursing Assistant School. That made sense, to care for others. Honesty, I didn't know what else to do and it was an actionable step to something. I remember getting checked off on infant CPR and having to force myself to give that tiny maniquin compressions.
What was the point, I thought, babies do die.
It was a long road of prerequisits, one class at a time, to finally meet admission requirements to go to school to become a registered nurse. With a lot of tenacity, laser focused on achieving something tangible, I got into Emory University School of Nursing on several scholarships and work repayment assistance.
Graduating from Nursing School with a 4.0 while my parents watched from the the audience, is one of the proudest moments in my adult life. My mom, also a Registered Nurse, placed my nursing pin on my lapel. I was entering the new graduate program as an Adult Critical Care RN at Emory University Hospital. I promised myself on that day I would always listen to my patients.
Always have and always will.
I am forever grateful for the one nurse that listened to me.
Linkedin may be an uncanny place to share grief stories, but that is how Amanda and I connected. It is also when I realized how much I had dismissed my own experience. Amanda was going to start a support group for parents who had a miscarrage or infant loss. Though 22 years since Aleea's death, her post stopped me cold. It was time for me to revisit my grief, to come clean, to help myself in order to continue to help others.
But I'd been helping others as a nurse for 16 years!? Yes and No. I was helping everyone but myself. The loss of my daughter was still a deep untouched seed of absolute saddness. I felt it when both of my sons were born and every day since. I startle when they play scream from the other room. This deep panic lives mostly dormant in my nerves, but when it surfaces, it overtakes all reason and logic. Absolute panic of losing another child. Or worse, being a bad, sad, or absent mommy. Or letting Aleea down by not making the most of my life on Earth. Constant pressure that caused constant pain.
It wasn't an acute, sharp pain, but a dull constant type that just sits in the pit of your soul. Eventually it consumes all that you are, but happens so slowly that one may barely notice that they are no longer capable of experiencing joy.
Not only did I admire Amanda's bravery, but I embraced it. I began posting a bit about myself, my stories, my experience, and expertise. I never thought I'd share my traumatic personal stories or my small Intervention business, I just knew I wanted to help educate on substance use and mental health.
As I built a trusted community on Linkedin, it became much easier, and quite therapuetic, to open up. Some days, Linkedin was my journal entry, and visiting and conversing in comments of other folk's content became a virtual support group.
I gained momentum and business from Linkedin, but the amazing thing was the real friendships I was forming. I noticed if folks were missing from my feed, I cared if they were OK, I sought them out.
Folks checked on me too. They challenged some of my thoughts and assisted personal growth. They also supported me when naysayers came to comments with sole intent to hurt, not contribute.
I'm going to go pretty deep here. Linkedin, during Covid19 isolation, became one of my most successful therapy stints in my entire life. I have explored and processed trauma. I've helped to guide others. I've found resources for myself and my clients all over the country and international (Like the amazing Dave Brown - the best BS detective around and my savvy VA, Oliver Allen). My healing has come through truth, vulnerability, willingness to take feedback, and desire to show up as myself.
Doing all that requires knowing and liking yourself. Isn't that the ultimate goal of therapy? I was accomplishing, virtually, what I had strived to do for 20 years.
So many contributing factors and humans, I couldn't complete a list. But I know it started with Amanda Knight, Nate Cogburn, Simon Chen, and Daryn Rowley. 4 very different humans with some of the most tenacious personalities I've ever encountered. These souls, bursting with potential, have been cheering me on since the beginning.
Amanda has gone from a human wanting to help other parents to the Founder of a nonprofit organization, Sadie's Purpose. Sadie's Purpose supports families of NICU babies "one bag at a time".
She delivers bags of essential items, tolietries, activities, and hope to the familes with babies in the NICU.
Often these parents and siblings stay in the
hospial lodging for weeks, sometimes months, traveling home or going to work the best they can. They try so hard to be present for their tiniest family member, but they gradually lose track of days, night versus day, and experience constant fear to leave the hospital; jump in panic at every phone call.
"You need to take care of yourself or you will never be able to keep it up"
- Amanda Knight
So how did Sadie's Purpose save me? It reconnected me with my deceased daughter. It got me feeling, talking, typing, and saying her name after two decades of doing every thing I could to make it all better. And when we go back to where the trauma begins, we can process and we can heal. It has been painful, but releasing. I have a calmness in my body that I haven't felt in so very long. One might say I'm now I beliver in social media.
I'm not going to go that far, but I am certain we all have Potential and Purpose, and I have been overwhelmed by the community, generousity, empathy I've found on Linkedin.
Life is just a series of moments and interactions. Maybe they all have purpose or maybe it is all random and the magic is just what we decide to do with whatever is tossed our way.
Now get on with your purpose, tap that potential, revisit that trauma deep inside you holding you captive from feeling daily joy. It is time.
You may visit www.sadiespurpose.org to help us get to our $750 fundraising goal by July 1.
Purpose Merch (totes, tshirts, onesies) at www.holisticinterventionist.com and $2.00/item goes to Saie's Purpose through end of June!