Five years ago, when I found out I was pregnant with my daughter, I began to imagine all the possibilities of who this little person could become and what she might accomplish.
Every appointment seemed typical. She had every limb, every little feature we anxiously waited to see, and despite having what was considered a “geriatric” pregnancy, everything appeared “normal.” I envisioned limitless possibilities for my little one. I never stopped to consider that those possibilities might unfold differently than I imagined.
I would soon learn just how vast human life really is—and that limitless possibility does not always look the way we expect it to.
Failure to Thrive
Those three words changed my family’s world forever.
My daughter was three months old when we received her Prader-Willi syndrome diagnosis. One of my first thoughts was, What did I do? I wondered if there was something I could have done differently or something I had somehow done to cause this.
Then came the searching.
I fell into a search-engine frenzy, trying to understand every medical term, symptom, prognosis and possibility. The more I searched, the more it felt as though the plans, hopes and dreams I had imagined for my beautiful daughter were beginning to unravel.
There was fear. There was grief. There was despair.
And there were so many “what ifs.”
What if she couldn’t do this?
What if she never did that?
What would her life look like?
What would our lives look like?
A rare genetic disorder diagnosis can make you feel as though someone has handed you the script for your child’s entire life before their life has really even begun. But my daughter had not read that script.
From Fear to Action
Eventually, I realized I could spend my time fearing what might happen, or I could focus on what
my daughter needed from me right now. So, we got to work.
Over the first three years of her life, there were countless appointments, assessments,
intervention therapies and check-ins. Our calendar seemed to revolve around specialists, therapists and services. At times, it was all-consuming. I became determined to understand Prader-Willi syndrome, advocate for the services my
daughter needed and make sure she had every opportunity available to her. Through all of those appointments and therapy sessions, something else was happening. I was getting to know her. Not her diagnosis. Her.
My daughter approached the world with a wonderful spirit. She was loving, kind, joyful and incredibly determined. While everyone around her was evaluating development and documenting progress, she was quietly showing us exactly who she was.
And slowly, the milestones came. They didn’t always come according to the timeline printed on a developmental chart. Sometimes
they took more work. Sometimes they required therapy, repetition, patience and encouragement.
But they came.
And every time she accomplished something we had worked toward, I learned a little more about the danger of deciding what someone is capable of before giving them the opportunity to try.
On Her Own Time
My daughter has taught me that there is a difference between understanding a diagnosis and
allowing that diagnosis to define a life. Prader-Willi syndrome is part of her life. It means there are things we have to be aware of,
prepare for and manage. Positivity does not mean ignoring those realities.
For me, positivity means refusing to allow the challenges to become the only things I see when I
look at my child. Awareness, involvement and advocacy have helped me better understand her diagnosis and
create an environment that is safe, loving and active. But my daughter has taught me something
equally important: no assessment can tell me everything she will become.
Somewhere along the way, my question changed.
Instead of always asking, What if she can’t?
I started asking, How can we help her try?
There has also been a quiet lesson in faith throughout our journey.
I value the doctors, specialists, therapists and professionals who have helped our family navigate Prader-Willi syndrome. Their expertise has been invaluable. But I have also learned that an assessment describes where a child is at a particular moment. It cannot completely
predict who that child will become.
There are moments when I simply have to remind myself: people can tell me what they see today, but they don’t get the final word on tomorrow.
No matter what they say, God says there is still more to the story.
Five Years Later
Today, the despair and “what if” mentality that consumed me after my daughter’s diagnosis have been replaced by something very different: acceptance and optimism.
That doesn’t mean I never worry. It doesn’t mean every challenge has disappeared. It means I no longer allow fear of tomorrow to steal the possibilities of today.
For nearly every doubt I once carried about what my daughter’s capabilities might be, she has
found a way to answer me:
Watch me.
Her journey may look a little different. Something may take longer. We may need additional support. Sometimes we may have to find an entirely different route to get there.
Different does not mean impossible.
This year, my daughter celebrates her golden birthday as she turns five. Our family decided to
celebrate at Disneyland.
Five years ago, I might have approached an experience like this by focusing on everything that could go wrong or everything we would need to manage.
Today, I think differently.
I think about how we can prepare for what she needs while still giving her room to experience
the excitement, magic and wonder of simply being a five-year-old celebrating her birthday.
I want her to shine.
I want her to explore.
I want her to experience a life full of possibility.
And perhaps that is the greatest transformation of these first five years.
When I was pregnant, I imagined limitless possibilities for my daughter.
Her diagnosis made me question whether those possibilities still existed.
Five years later, I know they never disappeared.
They simply became hers.
My job is not to determine where her limits are. My job is to understand her needs, advocate for her, prepare her, support her, love her—and then give her the opportunity to show the world what she can do.