Embracing The Language: Maria Barber at TEDxReno
The speaker advises viewing life changes, like having a child with a disability, not as a deviation from a dream but as a new destination requiring adaptation, using her daughter Laila's journey to illustrate how unexpected challenges lead to unforeseen growth and profound purpose. She recounts the initial shock of realizing her family's life trajectory changed—likened to landing in the Netherlands instead of Italy—but emphasizes that focusing on the 'loss' prevents enjoying the 'new' reality. This shift in perspective allowed her to pursue stem cell treatments and build a foundation for community giving, ultimately leading to remarkable physical advancements for Laila.
## Speakers & Context
- Unnamed mother; sharing her experience raising a child with a disability.
- Context: Addressing those who may not have shared the unique experience of raising a child with a disability.
## Theses & Positions
- The experience of raising a child with a disability is best compared to landing in Holland when planning a trip to Italy.
- The initial disappointment over a lost dream ("the loss of a dream") is significant, but dwelling on it prevents enjoying the positive aspects of the current reality.
- Every person faces unavoidable life changes, such as the loss of a family member or a change in health status.
- The critical factor in adversity is the choice to resist or accept the presented moment, as this choice opens a "whole new world of opportunity."
- The speaker's purpose shifted to ensuring her daughter could become an "independent thriving adult giving caring loving in this world."
## Concepts & Definitions
- **Holland (as a metaphor):** The unexpected place where one lands instead of the planned destination (Italy); characterized by learning a new language, meeting new people, and accepting what is present.
- **Milestones:** Small, incremental developmental achievements (e.g., taking two independent steps) that, though small individually, represent massive progress when accumulated.
## Mechanisms & Processes
- **The Shift in Purpose:** The process of moving from surviving daily challenges to proactively establishing a long-term goal (funding and receiving stem cell treatment) for the child.
- **Fundraising/Community Building:** Initiating a fundraising effort after needing treatment, which built confidence in the parents to advocate for their child.
- **Advancement through Therapy:** The intensive, structured physical therapy program serving as a measurable mechanism for physical improvement, moving from basic support to full independent mobility.
## Timeline & Sequence
- **Pre-Birth:** Planning for the baby, like planning a vacation to Italy.
- **Arrival/Diagnosis:** The moment of realizing they were not in Italy, marked by initial issues like severe acid reflux and critical food allergies.
- **Early Diagnosis:** Initial testing at age two and a half revealed a diagnosis of hypotonic cerebral palsy with choreoathetoid movements, despite normal MRIs.
- **Unexpected Guidance:** The realization came from the daughter's pregnancy, leading to learning about and banking umbilical cord stem cells.
- **Treatment Phase:** Beginning to talk to global doctors, leading to the decision to proceed with stem cell treatment when the cerebellum was found to be smaller than normal.
- **Current Status:** Two and a half years later, undergoing intensive physical therapy.
## Named Entities
- **Laila May We:** The daughter.
- **Matt:** The husband.
- **Nora:** The daughter whose pregnancy initiated interest in stem cells.
- **Stanford University of Chicago** and **Shriners in Sacramento:** Locations visited for diagnostic testing.
## Numbers & Data
- Laila's initial weight measurement: **10 pounds 1 ounce** at 8 months; **10 pounds 2 ounces** at 9 months; **10 pounds 1 ounce** at 10 months.
- Diagnosis age: **Two and a half years**.
- Physical therapy program duration: **Four weeks long**, **five days** a week, **five hours** a day.
- Fundraising period: **Eight months**.
- Time elapsed since the start of the narrative/struggle: **Two and a half years**.
- Loss of opportunity metric: The failure to reach a planned destination (Italy).
## Examples & Cases
- **Initial Challenges:** Severe acid reflux and critical food allergies.
- **Diagnostic Findings:** Hypotonic cerebral palsy with choreoathetoid movements, with MRI findings showing normal results, leading to extensive testing (MRIs, EEGs, EKGs, nerve conduction test, skull X-ray).
- **The Unexpected Guide:** The greatest gift came from the daughter, Nora, leading to stem cell banking.
- **Community Support:** A man who gave **three hundred dollars** for Laila's future, unknown to the speaker.
- **Financial Success:** Earning **five thousand dollars** for Laila on purses made at a single vendor show.
- **Physical Progression:** Progressing from using a walker with all wheels locked to moving independently enough to run a start and navigate a hopscotch grid.
## Tools, Tech & Products
- **Umbilical Cord Stem Cells:** The biological material banked for future medical treatments.
- **MRI, EEG, EKGs, Nerve Conduction Test, Skull X-ray:** Diagnostic equipment used during the diagnostic phase.
- **Walker** and **Forearm Crutches** and **Quad Canes:** Mobility aids used by Laila.
## References Cited
- None mentioned.
## Trade-offs & Alternatives
- **Option 1 (Mourning the Dream):** Staying focused on what was lost (Italy/original plan), which risks never appreciating the present.
- **Option 2 (Adaptation):** Accepting the new reality (Holland/disability), which requires learning new skills (new language, new life, new goals) but offers eventual opportunity.
- **Medical Alternative:** Relying solely on conservative care versus pursuing advanced, costly treatments like stem cells.
## Methodology
- Diagnosis required a battery of specialized tests (MRIs, EEGs, etc.) when initial symptoms were unclear.
- The successful outcome relied on leveraging community networks and funding ($300 contribution).
- Treatment was managed through intensive, structured physical therapy protocols.
## Conclusions & Recommendations
- The most important takeaway is the ability to choose acceptance over mourning the original plan.
- The speaker urges the audience to take that "bump in the road" and embrace the present, promising that this path will reveal opportunities greater than what was originally anticipated.
- Recommendation to the audience: To "take that bag in your life" (metaphor for passion/opportunity) and run with it.
## Implications & Consequences
- A disability diagnosis does not define a person's capacity; recovery and progress are possible through dedication and external support.
- The process creates unforeseen positive outcomes, such as finding a deep sense of community and developing new skills (fundraising, design).
## Verbatim Moments
- *"well it's like planning a fabulous vacation trip to italy... you go plane lands several hours later stewardess comes out and says welcome to holland"*
- *"the loss of a dream is a very significant loss but if you spend your time mourning the fact that you didn't get to italy you may never be free to enjoy the very lovely and very special things about holland"*
- *"from my plate for 17 years everything had its place i have a planner from beginning to end in every detail"*
- *"the moment that changed his life"* (Note: This phrasing was used in Example 1, but the emotional impact is similar here regarding the realization of change).
- *"we all have those days... we all have those days"*
- *"we were buying new guidebooks we were learning a whole new language and meeting an entirely new group of people"*
- *"we had just landed in holland what an amazing feeling"*
- *"what's most important is what we choose to do with that moment in time"*
- *"i promise a whole new world of opportunity will open up this new language that we can learn can teach us true humility help us gain a greater sense of community change our perspective on life and take us on a journey that's far greater than we could ever expect"*
- *"take that bag in your life and run with it"*