‘Your baby has a funny eye.’ I looked down and saw it. The folded ear and almond-shaped eyes. The world froze.’: Woman advocates for special needs moms, ‘Our path is unique’

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“Growth in life often happens when we experience what we feel to be loss. Our family went through what we now refer to as the 5 years of hell. In the midst of it, we just keep going each day, putting one foot in front of the other. We use to laugh that every time the phone rang, no matter who was on the other end, we were just grateful when it wasn’t news of another tragedy.

It started in 2008 with the birth of our first son. We are Australian but we were living in Bangkok, Thailand at the time. I had such a beautiful natural birth that was only 6 hours. When I held my son for the first time, I remember seeing his tiny little nipples and little folded ear and feeling a rush of love like I had never before experienced. He was perfect.

He started developing some breathing challenges with fluid on his lungs. We were assured it was nothing serious and he just needed a little bit of time in the special care nursery.

Courtesy of Sinead Quinn

On his third day of our life, as I sat in the special care nursery holding my perfect son, a doctor appeared before me to sign some papers. She was Thai and had a very pleasant assuring disposition. I signed the papers, blissfully staring into my baby boy’s blue eyes while sitting on the pink fluffy clouds of happy hormones, mesmerized by how I had built this perfect human. He was a part of me.

I casually asked the doctor, ‘Sorry, what did I just sign?’

The doctor responded in broken English, ‘Oh, this is for a genetic test. Your baby has a funny eye. We test for Down syndrome.’ And left the room.

I couldn’t breathe… I looked down at him and I saw it. That little folded ear, his beautiful blue almond-shaped eyes. She was right, he has Down syndrome. The world froze.

Courtesy of Sinead Quinn

The next 2 days were a haze of speaking with doctors, searching the internet for answers – never a good idea. My milk came in with massive exploding breasts and I had no sleep. Pure paralyzing fear and anxiety like I had never before experienced attached to the new reality of our lives. If I sat still for too long, I felt like I was going to vomit.  ‘What do we do? How could this happen to us? This was not the plan…’

Needless to say, the emotional rollercoaster was intense, but gratefully, it didn’t take us long to realize our fears were just that. Fear, not reality.  While 12 years ago we didn’t have Instagram or Facebook groups to find other mothers of children with Down syndrome, there was a nurse in the hospital who had a 16-year-old son with Down syndrome. She was like a Guardian Angel, sent to protect us. She was amazing, kind, loving, caring, and shared so many stories of her beautiful, clever son. She came to visit us each day, spoke to us with love, and gave us space to grow and understand our son’s possibilities.

Courtesy of Sinead Quinn

We left Bangkok and returned to Australia to begin our lives as new parents. It looked a bit different than we had imagined, as he has many doctor appointments. We were on a strong learning curve of medical jargon. However, we are fortunate Torryn doesn’t have many of the common medical conditions that can sometimes accompany Down syndrome, and is very strong and healthy.

During this time, I also started to realize how many expectations I had unwittingly set around becoming a parent. Unknowingly, when I was pregnant, I had expected to have a baby and walk out of the hospital breastfeeding perfectly and happy. The world as my oyster with a baby that slept.

Courtesy of Sinead Quinn

Of course, this was far from reality and I had moments of unraveling and grieving for the life I had expected. It didn’t last long, as this was far outweighed by the celebration of the life we now had. This, I would learn, was my first of many, oh so many, lessons in parenting. Life in our little family life became routine with various weekly therapies and doctors checks. Weeks turned into months and the months turned into 18 months when suddenly we were pregnant with our second child, this time a little girl.

I could tell straight away she was feisty. Not even a week after discovering I was pregnant, my morning sickness was so intense. One morning, I opened the fridge to what felt like a soccer punch to my stomach. I vomited all over the contents in the fridge. With all the feistiness I had predicted, our daughter arrived dramatically early at 28 weeks after I had been hospitalized for placenta previa. We are fortunate that even with her dramatic and incredibly early arrival, today, she is healthy and strong.

Courtesy of Sinead Quinn

In 2012, we welcomed the arrival of our youngest son. Gratefully, his arrival was far less dramatic than our previous arrivals, but once he was here, I felt different.  Not the normal different of trying to juggle three children under 4 years old, if there is a normal way of explaining that tornado of chaos. Instead, I felt different different because the baby blues did not go away after a few days like it had before.

You see, our rollercoaster ride of becoming parents also involved losing my dad to cancer and almost losing my mom to a surgery that had gone wrong, resulting in her being hospitalized for 6 months.  Life had been a tornado of once-in-a-lifetime events happening all in the space of 5 years. My ability to hold eternal optimism had faded and fatigue, depression, and isolation set in.

Courtesy of Sinead Quinn

One day, not long after our youngest was born, I sat in the doctor’s office and I cried. I cried because I was tired, I cried because I was depressed, I cried because life is not meant to be this hard. I cried because my boobs hurt and I hated breastfeeding. I cried in grief and pain and loneliness and deep sorrow of feeling life was not fair.  And I asked for help.

For me, the process of treating and healing from PND was actually pretty straight forward, though at the time hard to understand and grasp. I started weekly therapy and taking medication for my depression. I implemented mini self-care measures into my day and the spark that was ‘me’ began to return. It felt like my healing was taking a long time, but looking back I started to heal within months of asking for help.

Courtesy of Sinead Quinn

A lot has changed since that time in our lives, which honestly now feels like a distant memory. I am about to become a parent to a teenager. I mean, Jesus take the wheel! Our daughter is a tween at 10 years old and our youngest is 8 years old going on 48 years! We now live in the Seattle area, having moved to America almost 6 years ago for my husband’s work. I went back to school to study health, yoga, and meditation and I am now a Wellness and Empowerment Coach with a focus on supporting mothers of differently-abled children.

Along the road I have walked and crawled, trodden, and now occasionally roller skate, I realized my community of moms with differently-abled children lack resources, support, and understanding. Our path is at times very unique. Our daily lives have an element of ‘extra.’ Extra appointments, extra judgment, extra advocating, extra support requirements, and more often than not, it also comes with extra love. But all that extra can come at a cost and that cost can be our physical and mental health.

Courtesy of Sinead Quinn

Did you know as a mother of a child with special needs we are statistically 40% more likely to die of cancer, 150% more likely to die of cardiovascular disease, and nearly 200% more likely to die from misadventure than other mothers? This is not okay. I am passionate to turn these statistics around, which is why along with wellness and empowerment coaching, I am now launching Finding Happy The Podcast. I am passionate about raising awareness and lifting the shame of mental health in our community of moms. I want to start the conversation to create the change.

Courtesy of Sinead Quinn

I don’t want other moms to feel the shame I felt. After experiencing depression and anxiety, hitting burnout, and eventually being diagnosed with autoimmune disease, what I struggled with the most was hearing from and talking with women who understood what I was going through.

I want to bring together all different types of moms with differently-abled children – mothers who are stay-at-home mothers, business owners, entrepreneurs, influencers, and professionals of all different backgrounds – to share their stories of being a mom during this season of life, to inspire and uplift others.  When we share our stories and raise our voices, we create a space for others to rise up beside us. I never want others to feel as lonely as I did. ”

Courtesy of Sinead Quinn

This story was submitted to Love What Matters by Sinead Quinn. You can follow their journey on Instagram, Facebook, and their website. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more touching stories like this: 

‘My daughter Penny is not a ‘mistake.’ She is perfection.’: Down syndrome mom explains the difference between ‘inclusion’ and helping special needs individuals ‘belong’

‘Is this the last time I can kiss him?’ I’d just learned my baby had Down syndrome. Now, he was blue, floppy, and not breathing.’: Mom says baby with Down syndrome, heart defects has taught her to ‘focus on the positive things in life’

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