Friday, July 8, 2011

Reflections on Molly

Let's see. Seven years ago today, I was putting the finishing touches on our seating chart and programs for our upcoming wedding (I must remember our anniversary is coming - July 17th!). I had just finished my second year of teaching music to middle school students. And although we were never "rolling in the dough", money wasn't a huge concern: Our monthly bills were paid, I could go shopping and we could even eat out more then once a month! Seven years ago, I knew nothing of seizures, I knew very little about autism, I knew even less about my ability to handle a crisis. It's amazing the things that change your life. Some of the hardest experiences I have ever had, have been the most influential.

Fast Forward two years to July of 2005. I was four happy months pregnant with our very first baby. We had bought a house, and were busy preparing for parenthood - as if that preparation is actually possible! It was November, election day to be exact, when trouble started for me. I had horrible pains shooting through my back. I went to the doctor, I went to the ER - I was diagnosed with a UTI and sent home with an antibiotic. I got no better, I got worse. I couldn't keep anything down, Percosets (prescribed for pain) wore off after a half hour. I couldn't sleep, hot showers were the only temporary relief I could find. I couldn't even make it to school to teach - I made it through a portion of the Teacher Production of Charlie Brown, but to this day - couldn't tell you what I was doing or singing throughout. Multiple doctor visits, blood work and my insistence landed me back in my OBGYNs office on Monday November 14th. I wasn't there for five minutes before they sent me to the hospital. I was oblivious, thought I'd be home that night, didn't even call my husband since my mom was with me. After all, my baby wasn't due for six more weeks! I should have known then that Molly wouldn't follow the "normal" rules, and that she would determine her own path in life. She came into the world that night via emergency c-section. I was unconscious and monitored very closely. She was sent to the NICU. I didn't even hold her until she was over a day old. She was a miracle, all 4lbs 13oz of her!

Molly came into this world fighting and she has taught me what it means to fight. It means never giving up, never putting a limit on what someone is capable of because of their diagnosis or illness. Fighting for your child is a mother's instinct. Molly was sick a lot, a very cranky infant who needed constant attention. She had nine ear infections in her first year alone and spent more time on antibiotics then off. Molly got tubes 3 weeks after her 1st birthday and then exactly one week later, December 4, 2006, had her first seizure.

If you've never had to watch your child seize, unconscious and struggling, it's heartbreaking. As a mother, it is ingrained in you to protect and to help your child, but there is nothing you can do for them in that moment. Her first seizure was a day care, I rode in the ambulance from day care to the hospital holding the oxygen mask over her face. I also felt the first jerk that signified her second seizure that same day, this one lasting over 30 minutes and resulting in a four day hospital stay. I have fought for her every day of her life. First to prove that something was wrong, when all outsiders saw was a beautiful happy baby, and then to discover what was wrong. I have fought for proper early interventions, for a unique school schedule, for air conditioning in her classroom. I have been fortunate to have the right people on her side, from doctors to teachers - people believing me and understanding the complexity of Molly.

We are still fighting, we don't know exactly what's wrong with Molly or why it is happening to Molly. I don't know what things will look like in ten or twenty years, I don't know what things will be like tomorrow! We've had to miss parties, activities, and events over the years. There are a lot of "no you can't" or "that's not a good idea" with Molly. However, as I said, we are fighters. We have created parties and activities that are safe for Molly. We have searched out a dance studio that is compassionate and knowledgeable to accommodate her special needs. We have befriended understanding people, who love our children for who they are and aren't scared of things getting tough. We have educated ourselves. We travel to Boston multiple times throughout the year to get her the best care we can. We won't give up!

I have spent too many nights by her bedside in the ER and the hospital. The nights at home have been spent watching her on her video monitor. My mommy radar is on full alert at all times. Sometimes I can just tell something's coming by the look on her face. It has taken years, but the doctor's office doesn't question me when I call any more; unfortunately it usually is something...

Before I had Molly, I used to watch parents of children with obvious disabilities, particularly those parents of the kids I had the privilege of  teaching. I used to think, I don't know how they do it, I don't know if I could do it. But now, I do know how they do it. It's love. I don't look at Molly's life as burden but as a gift. Don't get me wrong. Our days are not all princesses and tea-parties. There are plenty of moments when I cry out of frustration and anger, where the worry and the anxiety leave me sleepless and feeling helpless - but then I look at my beautiful daughter and she looks at me and says "I just love you Mommy" and my heart melts. I waited a long time to hear those words, and they are a treasure no one can ever take away.

"I just love you too Molly"

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