Here is the full transcript of Lito Ramirez’s talk titled “Shifting Great Expectations: Parenting A Child With Down Syndrome” at TEDxColumbus conference.
Listen to the audio version here:
TRANSCRIPT:
A New Beginning
When I was six or seven years old, my dad moved our entire family from a place called Quezon City in the Philippines to a town just north of here, Mansfield, so he could give us a chance for a better life. It’s an immigrant story of hard work and sacrifice and passing down greater opportunities to your children, and it was an expectation imprinted on him very early on in his childhood by his oldest sister.
Medicine was a clear path to success in his family, and as a matter of fact, many became doctors and nurses, radiologists, oncologists, dentists. My dad chose to be a surgeon, and he made it clear that medicine is what he expected of his children as well.
Growing up, my dad would often take me on rounds with him at the hospital, but I noticed that he’d never introduce me to other doctors or staff as just Lito. “This is my youngest son, Lito,” he would say. It was always, “This is my youngest son, Lito, the next surgeon in the family.” I was just 12 at the time, but even then, I sensed the weight of those words.
He expected me to follow his same path because for him, there was immense pride in seeing his children conform to the hopes and dreams that he had set for them. You can imagine his angst then when I told him at the end of my sophomore year of college that I was dropping pre-med and going into politics.
When my wife and I first became parents, I started to have a greater understanding and appreciation for what my dad was feeling for his children so many years before. Now that I was having my own family, I’d have expectations too for my kids.
A Father’s Dream
Now, I’m a big baseball fan, and when our first son came along, it was preordained in my mind that he would one day grow up and play shortstop for my beloved Cleveland Indians. “Because with a name like Alex Jose Ramirez, how could he not?”
There’s an allure to parenthood that your child will become the shimmering, more perfect reflection of you, and he’ll embody all the success and fulfillment that you wish for yourself but somehow never realized. All this collapses into confusion and chaos, however, when the reality of the child fundamentally and profoundly conflicts with the lofted dream.
Facing Reality
And nowhere is this more evident than when parents learn their child will have a genetic disorder or a chromosomal abnormality. Back in 2005, my wife, Kat, and I were living life just as it was supposed to be, great jobs, comfortable home, two young kids who were thriving and flourishing.
And I remember we were having a quiet moment watching the kids run around the backyard one day when she turned to me and said that the single greatest achievement of her life up until that point was our two children, so much so that she wanted badly to have another. And so we did.
At 35, Kat was considered of advanced maternal age, so her OB had encouraged her to go through prenatal testing in order to screen for any potential anomalies and to give us, as he phrased it, peace of mind. Initially, we decided against the test because we reasoned that whatever the result, it simply wouldn’t matter.
Now, this is a quaint notion, but in truth, there was an element of worry and angst over the uncertainty. So at 11 weeks, we agreed to the screenings, a blood test that would screen for potential genetic anomalies and an ultrasound that would measure nuchal translucency, which is the collection of fluid found under the skin at the base of the baby’s neck.
The first fissure in what we convinced ourselves would be this routine pregnancy appeared when the ultrasound technician suddenly grew quiet, disengaging from all the normal pleasantries and small talk. She was clearly focused and intent on what was on the monitor. And after a moment, she left the room, and this time returned with two obstetricians who, after a brief, almost curt exchange of hellos and how-are-yous, also grew quiet, focused, and intent on what was on the monitor.
We learned that day that the nuchal translucency for the child we were expecting was beyond the normal range. But even more concerning was that the scans detected a severe congenital heart defect. Both, the doctors would tell us, were markers for Down syndrome. After our child was born, a boy we named Cal, we received final confirmation that he did, in fact, have Down syndrome. And while all the tests and the screenings seeded this possibility in our minds, the news, nevertheless, felt like a sucker punch.
Adjusting to a New Normal
Having a child with a chromosomal abnormality never crossed our minds when we first planned to grow our family. So it was a struggle, coping with this odd new reality that our child would have an intellectual disability, ongoing health challenges, and that we would likely take care of him for the rest of his life. This was not the child we were supposed to have.
For anyone learning their child will have a disability, there’s a period where you urgently assess your capacity to care for a child with vastly different and unknown needs. Individuals with Down syndrome carry an extra copy of chromosome 21, and this leads to a number of co-occurring medical conditions.
For our son, Cal, who’s now nine years old, his own health challenges related to Down syndrome have resulted in nine trips to the operating room so far. He has spent at least one week in the hospital every year.