Apples and Oranges

This week I finally got Erik’s pediatric urine bag taped on him to collect a sample for a calcium level. I fed him his usual farmhand-sized breakfast and gave him glass after glass of water. After 45 minutes to an hour, I had only an embarrassingly meager sample. However, I decided we had enough fun for one morning and put the kibosh on the whole delightful process so Erik could retain one scrap of his dignity. I loaded Erik in the Jeep and headed to the pediatric office to turn in our little container. While I waited at the front desk in the lobby, I noticed a little girl very gracefully straddle a large toy car and use her chubby but obviously strong legs to propel herself forward across the waiting room with ease. She stopped upon noticing a stuffed toy nearby, bent delicately at the waist to pluck it from the floor, and easily returned to an upright position. I felt myself smile, profoundly amazed by her excellent motor skills until I slowly realized that this little person, probably well under a year old, was only doing what kids her age normally do. My son, who is likely twice her age, can’t begin to do what she did. Since I have not been in the presence of children much in my life, I never knew what “normal” was to begin with. This is rapidly becoming both a blessing and a curse in my case. I don’t have another child to compare Erik to, and there aren't other kids around me most of the time, so I don’t ruminate on Erik’s differences every day. Dominick is just two months older, and I have become absolutely blind to Erik and Dominick's differences over time. Being around Dominick has never really bothered me at all, partly because Erik and Dominick have always seemed like apples and oranges to me, except for a couple of occasions before our diagnosis. Perhaps this stems from the fact I have reassured myself for so long any differences they have are due to their small difference in age. It’s a defense mechanism, I suppose, which has allowed me to enjoy being around Dominick. I am also completely relaxed around him, as his parents have made it quite clear it is safe and acceptable to feel any way I want to, good or bad, in their home. I haven’t really thought about it much until now, but I am thankful for that. Most importantly, I got to know Dominick before Erik was born and we were immersed in the frightening, gloomy world of diagnoses, feeding problems, medication, echocardiograms, early intervention, and laboratory monitoring. I have to confess that being around infants still bothers me immensely, as their differences somehow seem the most painful of all to me, but I am adjusting to the wonderful, new babies in my life quickly without too much trouble. Once I get to know them and the shock of seeing how animated they are wears off, the differences seem to fade to me. You won’t find me running a day care center anytime soon, however (if you know me at all, you know that was never in the cards for me anyway). I am also completely unable to make a remotely accurate estimation of how old children are because I never got the feel for any sense of normal childhood growth and development. My knowledge is based solely on what is normal for Erik. That is perfectly acceptable most of the time, but to say that it is a shock to open my eyes and notice seemingly advanced children all around me would be an understatement. A pediatric waiting room sometimes seems like a miniaturized Mensa meeting to me, when in reality these kids are simply normal. It is impossible not to notice that they are gigantic and have the desire and ability to do so many things without trembling or a lack of fine and gross motor control. In our new world, most of the young members of Erik’s social circle generally have all kinds of serious problems, except for Dominick and his fairly newborn friends. I could take him to a regular play group, but with our twice a week therapy and my work, I’m tapped out on time and burned out in terms of energy. I just want to be home and save some time for a nice afternoon with Dominick. I admit that I sometimes detest seeing the world through this new perspective of mine, but I have a lifetime of it ahead of me. There is simply no going back to the old way of seeing things, as difficult as that is to accept. Interestingly, I concluded months ago that if Erik and I lived in a little log cabin in the woods with very little human contact, I would never think twice about his abilities or his syndrome. However, in the real world, I am constantly being reminded that we are playing a different ball game. I confess that on days I am feeling completely defeated, I still fantasize about being in that little imaginary cabin with its red and white gingham curtains pulled closed. It's times like these I put on Erik’s favorite music, roll around with him on the floor in a lively round of WWE Baby Smackdown, and enjoy what is normal to us for a while before the rest of the world comes knocking on the door again to remind us we are different.