Caregiving, Disability

September 8, 2021

Supermoon Mama

DDX3X and Autism
I'm WillowjakMama!

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. Now it's my favourite place to be.

hey there

Before I begin, there are three things you need to know about me: 1 – I am NOT a writer. Far from it. 2 – I have been home with my kids for so long, I’m not even sure I remember how to spell.  3 – I’m a complainer. Big time. It’s one of the things I hate most about myself, but I can’t seem to stop. However with this one, I find that even when I give an honest answer as to how my day, week or month has been, it sounds like a complaint. I am learning to become a better liar so that people don’t continue to avoid having these conversations with me. I have found that when most people ask how you are doing, they don’t realllllly want to know.

I always joked that after kids I would become the stay at home wife that never went back to work again. Clearly I had watched too many episodes of The Real Housewives. We would laugh and laugh at how ridiculous that was. Perhaps this is karma. I have two little girls that drive me absolutely bonkers, but they are the best things I have ever done with my life. Hands down my biggest accomplishments. Some may find that pathetic, but it is true. Let’s just say that my childhood wasn’t always “ideal”, so I feel as though I was on a mission to have a nice little family of my own, and be a good mom. I hope that I am succeeding at this, but only time will tell!

When I found out I was pregnant with my second child, my life went completely nutty. After a heartbreaking miscarriage, we tried for so long to get pregnant with my first daughter, Ofeibea. I was one of those obnoxious women with my first pregnancy. Everything was rainbows and butterflies. I wasn’t really sick, I had a lot of energy, and I really mastered how to milk all of my cravings! Icing on the cake was that one of my very best friends was due a few days after me. Perfect scenario.

Ofeibea’s arrival was so exciting for everyone. My side of the family had three grandsons and hadn’t had a grandchild in ten years, and she was the first grandchild on my husband’s side. We had a 12 person entourage waiting in the grungy hospital waiting room for HOURS awaiting her arrival. Needless to say she was spoiled with so much love from day 1.

Since getting pregnant the first time around was far from easy, I honestly didn’t ever think it would happen again. Part of me was okay with this. We had a healthy and happy child, and life was going smoothly. Why would we mess with a good thing? Then boom. Along came Maeve.

Right from the start things just didn’t feel the same. I was sick my entirrrrrrrre pregnancy. I swear that didn’t end until I pushed her out and the nausea finally went away. After my second ultrasound, they discovered that Maeve was a single umbilical artery baby. After googling like a maniac, I learned that this is often a marker for Down syndrome, so it was anxiety right from the start. When I say that I never felt any movement, that would be an absolute understatement. She NEVER moved. Ofeibea was constantly flipping and flopping inside of me, so this was a wee bit terrifying. I bought one of those baby heartbeat monitors online, and I’m still not sure if that was a good or bad idea. I was obsessed. If I could have left it attached to my belly all day long, I probably would have. Towards the end of the pregnancy, I had to go to the hospital for hours at a time attached to a monitor. I believe I had to wait until I felt ten movements, before I was free to leave. I could totally be making this up, my brain was mush at the time, but I am pretty sure it was something along those lines. 

Ofeibea had just turned 3 before Maeve was born, and she was needier than ever. She was so used to having my undivided attention, I am sure that she sensed her entire world was about to change. My husband is a pilot and away from home for days at a time, so I was really struggling to be excited about another baby. My father-in-law was quite ill at the time, and everyone was distracted. There just wasn’t the same kind of excitement about her arrival. No planning an adorable nursery, no time to milk the cravings, and definitely no eager entourage in the waiting room. Things were very different. Because of the single umbilical artery, they were concerned about a lack of nutrients being provided to the baby, and she was induced a week early. 

Supermoon Delivery

Unfortunately my gem of an OB wasn’t on call for the duration of my labour, and I was stuck with a nightmare doctor. She was so unbelievably rude, and made me feel as though I was putting her out due to my incredibly selfish penicillin allergy and the circumstances surrounding this unique pregnancy.  She was horrible. After being induced, nothing seemed to be happening. I was sent back and forth from my house to hospital a zillion times, until they finally agreed to just let me stay at the hospital until things got moving.  As soon as I finally started dozing off, things got REALLY weird.  It was the night of a Supermoon. I never believed in these “full moon”  types of stories until it happened to us. The birthing unit went from being eerily quiet, to madness in a matter of minutes.  Everyone was in labour. The screams! Ugh. I’ll never forget them. The nurses were sprinting from room to room, with the look of sheer panic in their eyes. So so strange. Little Maeve arrived about 7 hours later. She was so sweet. She had the teeniest nose I had ever seen, and just kept looking up at me with these massive eyes. It took me a while to get there, but I was in love as soon as I met her. 

The months that followed were rough. She never slept, and cried constantly. Everyone kept sharing their stories about their own colicky babies, but I knew in my heart that this was something else. She was super tiny, and was very behind on meeting any milestones. I think that was one of the worst experiences of my life. Filling out those stupid ‘Is my baby meeting milestones’ questionnaires at the doctor’s office was so painful. I hated doing them. I dreaded every appointment. By about 15 months old, I was sensing something else was up. She had been tested for everything under the sun, including Cystic Fibrosis. We were scared.

DDX3X and Autism Diagnoses

Fast forward to a year later, and we received an autism diagnosis. There was a sense of relief that we had some answers, and despite many doctors basically telling me that I was paranoid, we kept pushing for answers. Maeve finally received a DDX3X diagnosis at 5 ½.  As much as I thought that I was prepared for a diagnosis, I really wasn’t. DDX3X syndrome is a fairly new discovery, so it remains quite rare.  We were basically told: “Your daughter has DDX3X, there isn’t much known about this, here is a facebook support group. Good luck at life”. We are still very new to this, please bare with me as I am still learning. 

Life has been challenging to say the least. For so long, I have felt like Maeve was in her own little world and didn’t care about anyone or anything going on around her. She’s non verbal, so we’ve had to figure out how to communicate. We spend so much time together, that I feel as though we have learned a secret language while being able to read each other’s minds. Years of therapy have been very helpful. We are getting there. I’m not sure what her life will be like, but my main concern is that she is happy and loved. I have so many sleepless nights worrying about what her future holds, especially after I leave this world. And then I have moments like this:  Last night we ordered pizza. As I was bringing the pizza box in, on her own, Maeve ran to the cupboard and pulled out three plates. One for each of us. She has NEVER done something like this on her own before. She will definitely grab one for herself, but never really thinks of others. She plopped the plates on the counter beside the pizza, and just looked up at me with the biggest smile on her face. She was SO proud of herself. I could have cried. It may take her a wee bit longer to figure this world out, but she’s doing it. A slower pace, and in a unique way – but it’s happening. I’m loving every minute of it and I hope you join along on this ride!

This post originally appeared in September 2020, under the title “Supermoon Mama”

If you would like to read more of Steph’s posts, check out “Everyone Deserves to Have One Friend“, “My First-born is the Best Sibling for my Second” and “Giggles and Fear“.

In celebration of this blog’s first year anniversary, we are taking a look back in celebration of all that we have learned, shared and accomplished, by revisiting all of our writers’ original posts. I hope that we introduce you to some stories you might have missed. Please show the writers some love by commenting and sharing their posts.

We couldn’t be here without our readers. Thank you so much for all the love and support and I hope that you are taking some of what you learn from our writing into your world, to support the people in your community.

Steph D.

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Hi, I'm Stacey.
Welcome to the
Willowjak Blog 

My blog started as a way to document my journey to wellness, but turned into a place to be inspired by others through our collective messy & authentic stories. We chat about themes that are often ignored and voices that aren't often given a chance at the mic. Now it's my favourite place to be. 

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