Dear New Mama,
I want you to know you’re not alone, feel all the feelings, Mama. All your feelings are valid.
I remember when I became pregnant with my little one. We prayed, we planned, we prepared for this child. We did everything we were supposed to do. However, everything that wasn’t supposed to be, happened anyway.
I had a rocky pregnancy, at the time, unexplainable bleeding, contractions, pain, but he was determined to live even then in the early days, and stayed with me, growing each day. We thought we were out of the woods after the end of the second trimester but at 33 weeks I was sent to a high risk fetal medicine doctor for polyhydramnios, which is excess amniotic fluid, usually a condition that needs to be monitored closely — it can be life threatening and indicates abnormalities.
It was there at the maternal fetal medicine specialist that we did bloodwork and numerous ultrasounds. We had a really big gray area where Tristan’s diagnosis was concerned. At that first appointment we received terrifying possibilities, several diagnoses based upon the issues our doctor could see through the ultrasounds. One of the first things she quickly said was her belief that Tristan had a one in three chance of Down Syndrome, one in three chance of some kind of skeletal dysplasia, one in three chance of him having something undiagnosable, possibly fatal through ultrasound.
She knew this was earth-shattering news and left the room to give us a few minutes. My husband and I wept together, holding each other, touching my stomach where this innocent baby was, I felt like I was gasping for air like I was being held underwater.
We were crushed.
Then, the NIPT test came back with a 52 percent chance of Down Syndrome.
All issues considered at that point, we were advised to prepare for the worst, losing our sweet baby before we could even hold him, before he could take his first breath. We had to switch all doctors and hospitals to a level 3 NICU where they could accommodate his medical needs, whatever that may be. We did all we were told to do.
Then, we were in a kind of limbo — a depressing, distraught twilight zone for three more weeks and then he suddenly came, ready or not, at 36 weeks. We were so excited and unbelievably scared.
We had an extremely traumatic birthing experience, between the two of us we coded three times, he wasn’t born breathing and failed his Apgar assessments, followed by a two-week NICU stay.
I wish that we were encouraged by our doctors to get plugged into Down Syndrome support groups prenatally or any other special needs groups. That would have made a positive difference in the time we spent worrying and feeling alone in the early days.
Our struggle was short lived though. In those first few weeks we witnessed compassion and grace in abundance. We found the right resources and support and moved past all the negative emotions that came, as with any unexpected twist to life.
I wouldn’t have chosen this new path at the time, but I chose this baby before he was even forming in my womb.
We chose to love him and fight for him no matter what — before his diagnosis.
We’ve researched cutting edge ways to ensure his health and well being successfully. He has shifted our paradigms on health and healing. As his mama I’ve fundraised, and helped parents internationally. We’ve done things we never thought possible! He has taught us so much more than we could have ever hoped for in his six short years.
We are wholly present in each moment, we appreciate the everyday simple joys that most rush through absentmindedly, and milestones others may take for granted.
We are kinder, more compassionate people. We will fearlessly advocate for him. We believe in miracles because we are raising one.
A child with down syndrome is one of God’s greatest gifts!
So, New Mama, whether you’re brand new and this is your first baby or you already have other children but are new to a child with disabilities. I want this to provide hope and positivity, reframing the narrative on unexpected diagnoses so that we can all bloom beautifully.