Like most major decisions in my life, the decision to have a second child was made on a whim. One December morning in 1997, my five year old daughter, Tabitha walked into the bathroom when I was getting ready for work and asked. “Mom, Am I ever going to have a sister or brother”? “Well, I don’t know? I haven’t really thought about it, but let me talk to your Dad.” I was 27 years old, worked a full time job and went to law school part time at night. Louie, my husband worked 6 days a week selling cars and my mom was watching Tabitha when she wasn’t at school. I was so busy trying to grow up and figure out how to pay the bills, I hadn’t even thought about having another child.
Louie and I had a storybook wedding, but our bubble soon burst after our married life began. I moved with him to Northern California where he planned on running the family business, car washes. We decided to try for a baby 2 months into our marriage and were pregnant the next month. Lou’s business began to suffer, it was El Nino that year and the car wash was closed for weeks on end. We were really poor. I remember going to the market when I was 8 months pregnant and they denied my debt card, credit card and wouldn’t take my check. I will never forget walking out of that Safeway, holding back the tears. Things did not get better, they only got worse after Tabitha was born.
When Tabitha was 6 months old, I had a vision while driving home from the car wash. This blinding ray of sun shot through my windshield and a voice said to me,
“ This is not how your life was meant to be.” “ People hate you at the bank, your credit cards are maxed out, you are fearful the car will be repossessed, you haven’t paid your rent and everyone at the utility companies think you are a scum bag because your payments are always late. Your perfect credit score is ruined, you don’t have a reliable car and your life is a mess at 23. You need to take care of Tabitha and not like this.” This voice in my head kept repeating everything that had gone wrong in the 1 ½ since I had gotten married. I loved Lou more than anything but at that moment I made a decision.
When I got home I called my mom and asked “Will you babysit Tabitha if I move home and get a job?” “Of course, I would love nothing better.” She offered to help pay for the rental of the moving truck and then asked “ Is Lou coming with you?” “ I don’t know…” That night when Lou came home from work I told him about the voice and the vision I had experienced earlier that day. I then said, “ I am leaving this week and you are welcome to join me but I can’t do this life anymore. I am all done here, I am moving back to Newport.” He said, “ I am coming with you, I would never let you leave without me.” We packed up the U-Haul and off we went. We spent the next 5 years working super hard to pay off our debts and I decided to get my law degree in hopes I could make some decent money in the future.
It was at this point Tabitha asked me about the sibling. That night I mentioned it to Lou. He said, “ I was wondering when you were going to bring it up. I figured you would think about it eventually. I really want to have another baby and I think we can afford it now.” “Wow, I have been so busy trying to survive I never once thought about having another baby. I guess it would be nice for Tabitha and I am getting older. Let’s do it,” I said. As with my prior pregnancy, I was expecting the next month.
I graduated from law school that summer during my 2nd trimester. My Popie (my mom’s mother) was diagnosed with pancreatic cancer the first day of bar exam review and we buried her the day I found out I didn’t pass. Tiara was born on October 27, 1998 and she spent 23 hours in the hospital before her release. She appeared to be a robust and healthy baby. I immediately took her to see Popie the day after she was born. Popie was able to hold Tiara with assistance but she was in the end stages of cancer and was so weak and confused. She kept saying to me “ the angel with the dark hair, who is the angel?” In retrospect I guess Popie knew Tiara was an angel and was different than other babies. Popie was a very special person and many people considered her an angel, so they may have been connected in a way I don’t understand. I was just grateful Popie was able to meet Tiara, as she was a very special person in my life.
After Popie’s passing, everyone was urging my to retake the bar exam. I had promised Tabitha that I would never take the bar exam again when she was a child if I did not pass the first time. It was really difficult on her and the family so I stuck by my promise and decided to stay home and take care of my two kids. I wrote law motions for my Dad while at home to make extra money but Lou had picked up all the slack as I worked less and less. Unfortunately, I now had $45,000 in student loans to repay but the education proved to benefit us all in the future, especially Tiara. I didn’t know then that my law degree would eventually help me forge through the health and education systems to get Tiara all the treatments and services she needed to grow and develop.
At Tiara’s one-month check-up, her pediatrician noticed a large white patch on her neckline. He thought it was a typical ash leaf birthmark but said we should keep it in the back of our minds; it sometimes can be a indicator of something more. She was on target for her milestones, well all they do is eat, sleep and poop at 1 month, so she was good. At her 3-month check –up she was starting to fall behind developmentally. She didn’t follow or track with her eyes, she wasn’t moving like a regular 3 month old and her neck control wasn’t great. We both weren’t super worried, since all kids progress at their own rate but we were now on alert and paying close attention to her development. When she was 4 months old, it became very clear Tiara was not like other babies and there was definitely something medically wrong with her.