I’m an awkwardly extroverted introvert (is that even a thing? I’m going with yes) busy navigating the weirdness of living life after losing a child. I’m the mama of a fierce angel and the wife of an amazing man that I’m lucky to call my high school sweetheart.
We’re madly in love with God and our daughter, both of whom have managed to completely shatter our expectations of what life ‘should’ be and show us daily the beauty that comes with being broken.
Norah Mae was born on March 1st, 2017 and was diagnosed with Trisomy 13. The moment I saw her sweet face my whole world stopped, exploded into a million pieces, and reformed around this chunky little lovebug that made us parents. Heaven lent us Norah for 5 beautiful days before she headed back to play with the angels on March 6th.
You have been through many Mother’s worst fear. Each letter I type is tapped with sincere gentle love and respect. Can you share what pre-diagnosis pregnancy was like?
I was blissfully naïve before that first ultrasound. I look back now and just laugh thinking about how obsessed I was with getting all the little details just right. Norah is our first child and I’m a recovering perfectionist/control-freak-but-I’m-working-on-it-really/eco-mama newbie; 99% of my days were spent researching how to earn my floral crown, have the most Instagram-worthy pregnancy, and be that perfect mix of doting mother and carefree adventuress. I was reading every blog known to man trying to figure out the basics – things like how my choice of crib mattress could affect my child’s chances of getting into Harvard. You know, totally normal.
What was the diagnosis process like? Was this when the blog was born?
We didn’t receive Norah’s official diagnosis until after she was born, but we knew it was a possibility the entire time. My first ultrasound was at the 20-week mark when we were to be finding out the gender. Well, along with finding out that Norah was a girl came the earth-shattering news that there was something wrong with our baby. The ultrasound tech had seen multiple abnormalities, which usually signals a chromosomal disorder. The words ‘Trisomy 13’ entered our vocabulary at that moment and unfortunately, never left.
Trisomy 13, or Patau Syndrome, occurs when a person has 3 copies of the 13th chromosome (we all generally only have 2 copies of each chromosome). This little extra chromosome is in every single cell, and can cause a whole host of issues. It’s a ‘snowflake condition’, meaning no two cases look exactly alike. Norah’s version involved a heart defect (Tetralogy of Fallot), Spina Bifida, and an umbilical omphalocele, among a few other things.
Ending the pregnancy was offered, but we never once considered that as an option. We believe that Norah was perfect exactly as God designed her; He had a plan for Norah, even if it didn’t make sense to us. Thankfully, we had a care team that respected our choice.
We did non-invasive prenatal testing (NIPT – a blood test that looks for the common Trisomies – 13, 18, and 21) which came back normal. Because the NIPT isn’t diagnostic – meaning not 100% accurate, they offered us an amniocentesis, which would give us a definite answer. After talking with our medical team and learning it wouldn’t change their care, and knowing it wouldn’t affect our decision, we chose to wait and get the results after she was born.
Because of the complexity of our answer to the ever-popular question “How’s the pregnancy going?” I decided to start HelloNorah.com not long after that first ultrasound. Telling and retelling the story was both time-consuming and emotionally exhausting. Having a blog was a way to keep everyone in the loop while also holding onto our sanity.
How did you prepare for her birth?
We went through all the normal steps; we set up the nursery, attended birth classes, had a baby shower, met with our doula, and even assembled the stroller.
We were desperate for normalcy, but escaping reality wasn’t an option. Every outfit we folded left us wondering if Norah would ever get to wear it, would she live to play with her toys, read her books, or sleep in her crib? Just seeing mothers hold their children made me wonder if I’d be lucky enough to get to hold mine.
We desperately prayed for a miracle, while at the same time understood the reality ahead of us. Our hospital bags didn’t include any of the standard baby items. Those ‘What to Pack in your Hospital Bag’ lists didn’t apply to us – we brought one swaddling blanket and a stuffed fox from Norah’s Godparents. We knew that she wouldn’t be coming home for a long while, if ever.
What support have you had since she’s left?
We’ve been blessed by the support of an amazing community of friends, family, and church family who have really showed up for us these past few months. When you find yourself so deeply broken and weary, those closest to you carry you until you learn to walk again.
Through the blog, we’ve also come to be a part of this incredible online community of families dealing with complex medical conditions and also those grieving the loss of their own children. Friends and family can love on you as best they know how, but nobody truly sees your heart like those who have felt the same pain. We just got home from a weekend at Faith’s Lodge – a retreat in Wisconsin specifically for bereaved parents, and finding that community of broken hearts has been huge in helping us navigate this new normal.
Honoring her life with your blog is so sweet and heartbreaking and real. How does writing support in healing?
I once read that ‘mama’s fight fiercely to protect their children, and when they lose their children they fight fiercely to protect their memory.’ Writing allows me to share Norah with the world, to tell her story; she lives on in the hearts of those whom she has touched with her fierce little life. It brings me so much joy to see how Norah is impacting the lives of so many people – I’m one proud mama.
What words of advice do you have for other mamas in a similar situation?
To the mama who has found herself on a similar path: This road sucks and I’m not going to tell you that it’ll get better or that you’ll one day arrive at some magically happy destination. I’m in no way more capable of handling this than the next person and I’m so sorry that we’re in this terrible club together. Cliché advice and over-simplified bible verses can sound infuriatingly trite right now, I know.
So all I’m going to say is this: Find your people. Seek out those with a similar story, message that mom on Insta that’s going through the same thing, or find a group of friends willing to hold your broken heart for a while over coffee. These people will be your life jacket, keeping you from drowning.
This club is bigger than you think, mama, and we’re here for you.
Follow Joanna on her personal blog.
Joanna, we are so incredibly sorry for your loss and our hearts are breaking for you and with you. Words cannot express how much we feel for you and we sincerely support you and Norah’s legacy.