On October 9, 2000, my daughter Daniela was hospitalized with pneumonia, five days before my 44th birthday. We thought this would be just like many other hospitalizations experienced by children with cerebral palsy. I had just been notified that the RFP for the federal grant for our newly funded resource center had been released and the proposal was due on November 3. As usual, I decided to bring the work to the hospital and scheduled a grant writing/birthday celebration with two close friends.
By October 14, Daniela had not improved and the doctors were having problems identifying an antibiotic to treat this unusual pneumonia. Though I was nervous, I kept the date with my friends and scoped out the grant as planned. I left the office feeling confident we had a strong proposal and Daniela would respond to the new antibiotic. That was not the case.
At 7pm on October 16, Daniela was rushed to the intensive care unit at Miami Children’s Hospital. She was intubated and we were told there was a good possibility she would not survive. I remember telling my youngest daughter, Maritza, and letting my parents know; it was one of the worst days of my life. The next five days were horrible, as doctors administered scans to check for brain activity and many other frightening procedures. After holding Daniela’s hand during one of the procedures and watching her scream, I decided to sign the “do not resuscitate” orders; I did not want her to suffer any more.
What would my life look like without Daniela? Would I be able to continue with my work on behalf of children with disabilities and their families? After all, the reason I got involved with Parent to Parent of Miami was because of my daughter’s special needs. I paused, closed my eyes and imagined this amazing organization thriving and moving forward without me.
Determined to beat the odds, I continued to pray for Daniella’s recovery and focused all of my energy on writing the grant proposal. I could not bear to think about losing Daniela and losing the funding for our program. The next few days challenged my faith and my spirit. I spent every hour in the ICU writing and focused on a miracle. It was a crucial point in my life, and I refused to surrender. Reluctantly, I gave permission for one more test.
On November 3, I kissed Daniela and headed out to mail the proposal. By the time I returned to the hospital, the doctors had identified the bacteria in her lungs and she was given new antibiotics. Within 36 hours, she was out of the ICU. Daniela and I watched the 2000 presidential elections in her hospital room. The project was funded in 2001 and continues to thrive. Daniela has never been back to the hospital, and we celebrated her 30th birthday on February 20, 2013.