My daughter, Miquitzli, was born 3 months early. She fought to survive and I vowed that I would fight for her all the days of my life. The medical team called her a micro-preemie because she weighed 732 grams at birth. Yes, that’s less than 1.5lbs. One doctor told me not to get attached since she might die. Her skin was translucent so you could see her skeleton. Her skeleton. My Dad, who is the best Dad and strongest man I know, was so traumatized when he saw his first granddaughter, he couldn’t get himself to see her again during the 4 months she was hospitalized.
She had many health problems including a detached retina; doctors told us she might be blind in that eye. She had under-developed lungs; she needed a breathing machine for 2 months. She had significant brain hemorrhaging, stage 3 intraventricular hemorrhages (IVH). Babies with stage 4 typically die. Doctors warned that she might have permanent brain damage.
Where most parents take home a healthy baby, I went home alone. I was in shock and felt toxic because I couldn’t carry her that last trimester. For 4 months, I practically lived in the NICU. I was there when Baby Michael’s family learned he would die. He died 2 incubators over from my baby. I was there when he died.
I suffered from post-partum depression. Maybe, it was situational depression too.
Death was closer than life.
Her Dad and I felt blessed she survived. We committed to doing whatever to help her thrive. He worked fulltime so I could dedicate my time to her. My life became countless doctors appointments, physical therapy sessions, and constant trauma of her health problems.
She was diagnosed with cerebral palsy because she had no “strength” in her arms or legs. I have no sense of when children normally crawl or walk because my baby walked for the 1st time when she was 2. Eventually, that diagnosis was reversed because she no longer had the symptoms of CP.
Health challenges- breathing issues, getting sick often, asthma, speech delays, a compromised immune system- have always been a challenge for her. But despite her feeling sick often, she has shown the same type of strength and courage that she showed when she was born. She’s a fighter. No, she’s a freaking brawler.
A year ago this month, she was hospitalized at 15 with a brain injury. She accidentally hit her head against a table counter. The impact was so loud that it quieted the entire houseful of my normally loud Mexican family during Christmas.
My fears of having her fragile brain hurt again came true. She had a significant injury. Her brain was bleeding. It caused her to have constant headaches and discomfort. She lost 15% of her weight. Noise bothered her. Light hurt her. She was miserable.
The experience transported me back to her traumatic start. I was anxious and wanted to fall apart. I held it together and jumped back into Mommy Attorney mode.
I tried to coordinate with her school, explain to her teachers what was happening with her brain. We didn’t know how bad it was. Brain injuries sometimes take time to reveal. Since it happened right before her finals, we had a marker and there was definitely something wrong. She then missed 3 months of school in the 10th grade- terrible for any college-vying student like her.
After I saw the way the school managed the situation, I started asking questions about other areas of the school, whether my daughter had real access to AP courses and quickly realized that I was mistaken. That school wasn’t the best option for her.
I started looking for options. I have worked for educational justice and educational opportunities for low-income and students of color through charter schools so I know that they are excellent options.
The best decision I have made to date is to have enrolled her in her Alliance charter school. She is finishing the first semester of her 11th grade this month. It’s been hard; she’s been sick often, she misses her friends. But she is being challenged. She is taking 4 AP courses. She has support for the ACT. She is enrolling in concurrent community college courses. The principal is wonderful; he takes pride in his school, engaging parents and clearly cares for the students. She has after-school support. Things aren’t perfect. We are learning a new school system. There have been a couple of hiccups. But, would I do this again? Absolutely!
She did not fight to live to be given mediocrity. I promised her, my God and ancestors that if she lived, I would fight for the best for her. This charter school is the best option for her. I would fight for it, for her, over and over again.
More info on Premature Babies: http://www.MarchofDimes.org
Miquitzli’s first time in the LA Times when we were an Ambassador Family for the March of Dimes: http://articles.latimes.com/2003/jan/20/health/he-premature20
Alma V. Marquez
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One thought on “Fear and Love: My Preemie taught me to fight for her and school choice”
Liz A. Garcia
Thank you so much for sharing this story Alma. Continue the work you are doing for Miquitzli, and other students. What a powerful duo you both are. I look forward to future stories.