Making your own milestones.

The first three years of Ella’s life I went to very few Doctor’s appointments with her. These early appointments were terrible, filled with devastating predictions of Ella’s future. Doctor’s would pull out those charts, the growth and the developmental milestone charts. They would point out that Ella’s growth and development was not on either chart.  Doctors would explain over and over that Ella would never be able to walk, talk, feed herself or do anything for herself— that is if she lived past the age of 5.  I stopped going to the appointments, it was too painful. I drove Dave and Ella to all the appointments and waited in the car crying or sometimes throwing up in the parking lot until they came out. When the appointment was over I would make Dave recall and recite every detail, if he left anything out I would get very angry. Ironically, after those first few terrible appointments of Ella’s life the rest of the appointments were not so bad. Ella was growing, we were taking exceptional care of her, we taught her how to drink from bottle keeping her off a surgically placed feeding tube and she was happy. We found a good pediatrician in Baltimore who was positive and supportive of our family. However, I still couldn’t bring myself to attend any of Ella’s appointments. It wasn’t until we moved to Vermont when Ella was 3 1/2 that I started to go to some of Ella’s appointments. After moving we found a wonderful pediatrician, she is very supportive of our family’s choices of care for Ella. I slowly started to realize that doctors should be part of your health care team, they are not the all mighty predictors of  Ella’s fate. Doctors are just doing their job the best way they know how, making sure you know all of your health care options. I also realized that we needed to make our own milestones for Ella. Each and every day Ella is making incredible strides in her life, making eye contact, smiling, learning to drink from a bottle, learning to eat solid foods, hitting a switch with her hand for communication, using her eyes to respond to yes/no questions and so much more. All of this may sound simple when compared to a normally developing child, but for Ella and kids like her these milestones are just as important, difficult to achieve and exciting for parents. These milestones for Ella and kids like her should not be overlooked, they should be celebrated and applauded just as much as milestones met for any other kid.

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