‘Before she died, I promised I’d be the best teacher I could. We had no idea how our life would unfold.’: Teacher turns special needs advocate after birthing son with Down Syndrome

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“Up until 4th grade, I had a hard time in school. I was sent to the principal’s office numerous times and had a daily note home (shh, don’t tell my kids). In 4th grade, I had a teacher, Mrs. Fisher, who took the time to get to know me. She didn’t read my cumulative folder or listen to past teachers and judge me based on my labels of being ‘that kid.’ She actually got to know the real me. She sat and had lunch with me, helped me with my work, and spent a few minutes each day reminding me I was cared about in school. Since having her as a teacher, I received great grades, enjoyed school, and set out to help other kids the way she helped me.

After she left her impact on me, I decided I was going to be a teacher. When I was in 6th grade, Mrs. Fisher was diagnosed with cancer and passed away. Before she died, I made her a promise I would be the best teacher I could be, and that’s what I set out to do. Little did I know the incredible impact her life had on me time and time again.

Courtesy of Larkin O’Leary

I taught elementary and middle school for 15 years before it became necessary to take leave and eventually resign to care for my son. Telling my students I wasn’t coming back was one of the hardest things I’ve ever had to do. I formed bonds with my students. Each of my students were MY kids. I still think about them daily and remain in touch with quite a few.

Since having my son, James, my perspective on just about everything has changed. From a very passionate teacher who cared about and loved all her students, who spent hours after school designing fun lessons and attending trainings- yet was afraid of teaching the outliers because I didn’t think I could do it- to someone who is advocating for all children to be educated together. The metamorphosis is easily described by my saying, ‘You don’t know what you don’t know until you know.’

Courtesy of Larkin O’Leary

Here is how my life came to this very point:

All my life, like many people, I dreamed of being a mom. I couldn’t wait to have a little mini-me running around. I wanted to teach him all the things and include him in all our family traditions. Christmas, Halloween, Easter egg hunts — it was going to be so exciting. Would he have my nose? My husband’s eyes? The dreaming and anticipation was so fun!

In 2013, my husband and I decided it was time to have a baby. We were one of the lucky couples who were able to conceive fairly quickly and, as a teacher, it was a blessing. We perfectly timed our pregnancy with the school year, so I had enough days left to take the rest of the year off and then summer would hit. When summer was over, I’d return as a full-time teacher and the grandparents agreed to watch our little bundle.

As a soon-to-be mom, I had my life figured out. We went to all the birth classes and read all the books. We had our birth plan. (I was going to try for all natural, but let’s face it, I’m a wuss. So, I’d do the epidural if I had to.) The nursery was decorated and we had all of the gadgets and gizmos we were told we needed. I had folded and organized and reorganized the clothing we’d received. My whole pregnancy was perfect. I didn’t get morning sickness. I wasn’t too tired and had no aches and pains that I remember. I loved being pregnant.

Courtesy of Larkin O’Leary

When we went in to deliver him, I remember driving down the highway holding my husband’s hand. ‘This is it,’ I said, ‘No turning back now!’ When we arrived at the hospital, we were promptly admitted because James’ heart rate kept dropping. After several midwives and doctors came to check me, I ended up having an emergency C-section. I can relate the whole situation to the song in Beauty and the Beast, ‘Be our Guest,’ where it starts off slow and then everything flies into motion.

Our son, James Alan O’Leary, was born on March 17, 2014 with a little tuft of red hair on his head. They told me to pull down my shirt to get ready for some skin-to-skin, only he never came. He had only let out one cry and that was it, so they rushed him to the NICU and my dazed husband followed behind. I laid there wondering what the heck just happened. I went to my appointment the day prior and everything was fine. She told me his heart was beating strong. He was only 6 days early, and I had done everything possible to care for him while he was in utero.

We had no idea how our life was about to unfold.

I waited for them to stabilize him and me for hours. The first time I saw my son was on an iPhone. My angel nurse (as I called her) went and took a picture for me so I could see what we’d created. When I was finally wheeled in to meet him almost 2 hours later, they gave us the news he had a heart issue. It required him being transferred immediately to San Francisco. They also suspected he had Down syndrome. I was so worried about the medical issues Down syndrome didn’t even matter to me. We were able to bring him home 8 days after he was born. My baby with a broken heart had to bulk up for the heart surgery he was set to have at 6 months old.

Courtesy of Larkin O’Leary
Courtesy of Larkin O’Leary

Only he didn’t bulk up, he barely ate and vomited 15-20 times a day. Despite my constant nagging to doctors that something was wrong, and pleas for intervention, I was assured it was ‘normal.’ As a first time parent, I had no idea what was ‘normal,’ so I just trusted the doctors to do the right thing. We waited for him to have his heart surgery, but due to his condition, they couldn’t wait the full six months. On June 30, 2014, at 3.5 months old, I handed my son over to strangers and prayed I’d get to see him again. It was a long 6 hour surgery, but he rocked it, of course! However, we almost lost him in recovery. He started spewing bile from his nose as alarms were ringing. He ended up having an undiagnosed web in his duodenum that required surgery just 7 days after his open heart surgery. Undiagnosed by doctors, but this is what I kept asking about the whole time leading up to the surgery.

Courtesy of Lindsey Tatum Photography
Courtesy of Pure Light Photography
Courtesy of Larkin O’Leary

He has since had 27 other surgeries and procedures and hundreds of days in the hospital, but you would never know it by looking at his smiling face. These things mainly occurred between the ages of 0-3, but we are still waiting for our ‘1-year-hospital-free’ card. He’s progressing, he’s growing, and he and his sister are the lights of our lives. We are grateful every day for them.

Courtesy of Larkin O’Leary
Courtesy of Larkin O’Leary
Courtesy of Larkin O’Leary
Courtesy of Larkin O’Leary
Courtesy of Larkin O’Leary

Due to his extensive medical needs, I had to resign from my job as a teacher. Writing sub plans from the ER or PICU just wasn’t sustainable. It was devastating to give up such a huge part of who I am. I spent many days mourning that loss. I felt like I had let Mrs. Fisher down. But what felt like devastation soon turned into a new passion, one fueled by an even greater source of love — my son. This new passion for shouting the worth and spreading the good word of acceptance and inclusion has taken my life in a direction I never could have imagined 7 years ago. The irony that my life truly began when a teacher looked past my label and got to know me, and now that is my mission for others, is not lost on me.

Courtesy of Larkin O’Leary

It all started with a simple presentation my friend and I did at the preschool my son went to for World Down Syndrome Day in 2017. From there, our local paper did a story and word quickly spread. We’ve presented to over 16,000 students and many community members, challenging them to BE THE ONE to be kind and inclusive. The local university has also had us come present our story and shed light on the importance of inclusion within the classroom walls. We also offer support and resources to families who receive a diagnosis. We were able to turn this new passion into a 501(c)3 called Common Ground Society, where we help the world find Common Ground.

Courtesy of Larkin O’Leary
Courtesy of Larkin O’Leary
Courtesy of Larkin O’Leary

I hope the world can learn from my son the way I have. Mrs. Fisher ingrained in me what my son has only further demonstrated — you don’t truly know a person until you take the time to get to know a person. He’s made me a better person, teacher, mom, and human. Even though things can be tough sometimes, I wouldn’t change it for the world. I am so grateful he chose me to be his mom. I sure hope Mrs. Fisher is proud, looking down on me.”

Courtesy of Larkin O’Leary
Courtesy of Larkin O’Leary

This story was submitted to Love What Matters by Larkin O’Leary of Common Ground Society. You can follow their journey on Facebook and Instagram. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

Read more stories about Down Syndrome here:

‘The nurse handed my daughter back. I instantly noticed her teeny tiny ears. ‘Do you think she has IT?’ I looked at my husband in fear.’: Mom of 3 births baby with down syndrome, ‘She is the most amazing human being I’ve ever met’

‘Is he ok?’ I was afraid to say the words. I never told a soul about my feelings, not even my husband.’: Mom births son with Down syndrome, ‘I am so thankful for his perfect 47 chromosomes’

‘My principal said, ‘I’m adding a boy to your class. He’s from foster care and has Down syndrome.’ I felt this tug on my heart. ‘I want to take him home.’: Single mom, kindergarten teacher adopts down syndrome student

‘She’s in heart failure.’ I’d most likely never get to meet her. We could deliver our stillborn baby.’: Woman gives birth to high risk Down syndrome baby, ‘She defies all odds’

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