A Mother's Love

My husband and I met when we were in our freshman year in college. We were together since our sophomore year back in 2004. We managed to finish our own degrees and went on to pursue our own careers. Talks of getting married came up every now and then, but we were planning to save up first. Come January 2009, we found out I was pregnant with our firstborn.

Our respective families were a little disappointed at first that things unraveled too fast. Eventually, the disappointment turned to excitement, as our baby is the first grandchild to both of our parents. To say that she's wanted and loved by everyone is an understatement. I had a relatively smooth pregnancy, though nearing my 37th week, my blood pressure remained high and so for fear of preeclampsia, my ob-gyne decided that I give birth the soonest possible time.

Sophia Adele was born 12th of September 2009. She was relatively small, but her APGAR scores were perfect. She gave me a scare though, when during her first night of being roomed-in with me, she turned blue. I screamed for my mother to wake up and call for help. The nurse on duty then assured me that Sophie's small body just can't handle the cold air-conditioning. A warming lamp was placed over her, shining her with warmth that soon brought color to her cheeks. Needless to say, I did not sleep well that night, or the nights following that incident. I am so afraid to lose Sophie when it was only just days before that I have come to hold her in my arms.

Sophie gained weight in the first few months of her life. But soon enough, she had difficulty gaining weight. She also started missing developmental milestones. Deep in my heart, I know something's amiss. But I believed what everyone around me (including her pediatrician) was telling me then: everything's okay; every child develops at his/her own pace. I shrugged off my worries and decided to focus on the many things we love about her. But you know that thing called "mother's instinct"? It proved to be true.

 One-year old Sophie looking no more than a six-month old baby

A week before Sophie's first birthday, I finally convinced my husband that we see a developmental pediatrician. Months of convincing myself that nothing's wrong in spite of everything I have read about babies' developments all came back to me. Actually, it doesn't take a specialist to figure out that something's not right... Almost a year old, Sophie still cannot sit, crawl nor walk. Neither can she talk, let alone babble. Sophie was diagnosed initially with Global Developmental Delay (GDD), meaning she has delays in all aspects including gross and fine motor, language, cognitive and social interaction. Therapy was needed to bridge the gap between her chronological age and her developmental age.

On our way home from the hospital, my husband and I were silent, lost deep in our thoughts. I was at a loss on how to process everything that had happened an hour before. It's as if my world was turned upside down, all plans thrown out the window. I was hoping then, that after Sophie's first year, I could go back to work, but it seemed God has other plans.

It has been two years since then. Two years of speaking to doctors and other specialists. Two years of having Sophie undergo this and that test, in hope of finding answers but only leading us to more questions. Two years of therapy, of having to look her in the eye and tell her that she has to do it, and not be affected by her cries -- for help, from pain or from merely not wanting to do it, I don't know. Her developmental pediatrician said it is not just GDD, it might be Cerebral Palsy (CP). A visit with a geneticist said it could be a rare genetic disorder called Cockayne Syndrome (CS) that occurs in 1 in 500,000 births.

ankle-foot orthoses (AFOs) + knee splint + ortho shoes = Robo Sophie

CP or CS? We still do not know what it is that Sophie has. All I know is that I am her mother, and I will do whatever it takes to equip her with the skills she needs to be an independent being. Be it fighting for her or fighting with her, she will always have Mommy by her side.

Mommy and Sophie during Sophie's 3rd birthday last September

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