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Special Needs Child?...

Special Needs Child? Special Needs Mother!

Big plans
Six years ago, after five years of dating, I married the man of my life. I was just starting my new career in legal support after being laid off from a large, global pharmaceutical company. I was advancing in my new career quickly. I was making a decent living and doing something that was creative and utilized my natural skills. My marriage was wonderful, and I had a great circle of friends from college and from my new community in New Jersey. We purchased a house in the suburbs instead of a metropolitan condo, and so having a baby was the next, logical step.

My hubby and I got pregnant quickly after being seduced with Valentine’s Day filet mignon, chocolate truffles, and sparkling wine. We were ecstatic. We were going to be the best parents ever. Even better than our own parents! My hubby tagged along at every OB/GYN appointment and helped around the house. I took great care of myself; I took my prenatal vitamins, extra folic acid, and extra iron, I ate lots of fruit and vegetables, drank water every hour, did prenatal yoga, and when my back hurt from the extra weight I was carrying, I got maternal massages almost weekly. I was relaxed and had a relatively easy pregnancy. I ran my pregnancy like other areas of my life; I put in the great effort now, to reap the rewards later. 

A Change of Course
For thirty-nine weeks of my pregnancy, I told friends, family, and my employer that I would stay home for twelve weeks, work remotely from home from time to time, have a bouncing baby boy, and juggle the demands of motherhood, wife, and employee with little effort and much humility. All of those predictions changed when I gave birth on November 8, 2008. My first-born came into the world wrapped in his umbilical cord and lungs filled with meconium. He had severe respiratory problems onset and lost oxygen to his brain. Today he is an infant with severe brain damage. After thirty-nine weeks of what was a relatively smooth pregnancy (just one bout of morning sickness), my world completely changed and I was no longer going to be the cool, collective mother I’ve always envisioned being. In the weeks following my delivery, I would actually turn out to be one major wreck. 

Coping with the Unexpected
I cried every time I visited my son at the state’s children’s hospital’s NICU. I would have arguments with God and scream, “Why me? Why us? My hubby and I don’t deserve this! Our son doesn’t deserve this! How can you be so cruel, dear Lord?” I would breakdown at the sight of my son in his isolette with his IVs, his breathing tube, and his feeding tube. My six-pound nine-ounce angel was monitored by machines and nurses and doctors who shook their heads whenever they recorded his daily stats. They would take a pitiful look at me and their eyes said it all, “Good luck with your brain-damaged kid, lady.” On top of that, I couldn’t produce or pump enough milk to feed him, so the hospital had to substitute with formula, which is absolutely awful according to the “breast milk Nazis.” My “Le Leches” (opposite of the “breast milk Nazis”) at first would reassure me that it was just the powerful painkillers from my emergency cesarean that kept me from producing milk. Then it was the stress from my “terrible little situation.” Then it was the quality of my breast pump (despite being a highly recommended hospital-grade pump). After a while, despite my “Le Leches”‘ support, and growing to an unbelievable F-cup, even I knew my breasts had failed me and my baby. I would ask myself, ‘what kind of horrible mother couldn’t produce milk for her own child?’ I placed such undue pressure on myself because that little voice in my head kept telling me, “every drop counts especially with your son’s lack of brain development.” The “breast milk Nazis” would repeat this at every single visit to the NICU.

A Wake-Up Call
Then, something happened a month after my son came into this world. I woke up from the fog that clouded my thoughts and actions. My baby blues lifted and I wasn’t relying on the morphine or Percocet and I returned to the determined woman I was before labor and delivery. For weeks, I’d thought that my kid needed the doctors and nurses to survive, but then I realized what he needed was his mother, and he needed her to be strong. I pulled myself together and worked on putting his medical and developmental needs ahead of my ambitious, yet fruitless dreams of being that perfect mother. 

A Little Help from Friends
I’ve abandoned the breast pumping. I pumped to the best of my ability for 6 weeks and that was good enough. This was my first kid and I had a million and one other new things to learn for this thing called motherhood. For once in my life, I asked for help from friends and relatives. And help came by the boatloads. Friends, in-laws, and colleagues cooked for us, and when they couldn’t (or didn’t want to) cook, they catered meals to our home or presented baskets of food. My son has been blessed with tons of toys and clothes. My Hubby and I have received decorations for our Christmas tree, and interior painting services from our beloved college friends. My sorority sisters even came over to help me clean the house.

A New Life
Now back on track, I increased my visits to the hospital to bond with my son. I forged relationships with my son’s physical, occupational, and speech therapists. I speak to the hospital’s social worker whenever I need to cry or need a new resource as we prepared for my son’s arrival home. I spoke to the pediatricians, neonatal nurses, and neurologist on a daily basis. I held my baby’s doctors accountable for lack of daily communication, and now, I even understand the chemical composition of the medications my son is given for his infantile spasms. While I respect the doctors’ medical expertise, I am his mother, and mother’s instincts trump all. For instance, I knew my son would learn to suck and swallow when the neurologist lost hope (said neurologist has since been replaced). And I knew my son would learn to cry even when the hospital didn’t want to recommend a speech therapist to be a part of my son’s developmental team. 

The Road Ahead
My son has a long way to go when it comes to reaching certain milestones now and in the future, but then again, so do I. Most infants learn to smile at 9 weeks. My son did it at 7 weeks. Some mothers can pump milk by the gallons. I cannot and will not. Society will label my son as special needs, but it is I who require the extra time and education to reach my milestones. My son, at seven weeks, taught me that I cannot permit others, even those of a respectable pedigree, to dictate what and when he and I can accomplish things. With faith, a lot of work, and help from others, he and I can accomplish all that is and all that will be required to establish and maintain our new relationship as mother and son.

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