We’ve been members of Little People of America (LPA) since the early days after my son was born. In the hospital, none of it seemed real. First and most important, my baby was healthy and beautiful. We weren’t going to say good bye and leave the hospital alone; we were going to welcome a son into our lives and take him home. Second, I had no idea what to do with a newborn, he is my only child. I stopped reading about caring for a baby long before, when he was first misdiagnosed. I fumbled ridiculously with nursing and attempts at bonding. The third is something which I was already aware of and had put in the back of my mind, now that he was safe. He was born with dwarfism.
I wasn’t even sure how to feel about any of it. I was so excited to be able to hold him that the tubes and wires didn’t seem to matter. For seven days, we learned CPR for infants, how to use his breathing alarm and C-PAP, and so much more. It all just swirled around me like it was jibberish, I just wanted to go home with my son. After all, my prayers had been heard; he was the baby that I thought would never be. He was the little motion inside of me that was finally here. He was my future and I wanted to start living it with him. Their words meant nothing but a bunch of stuff I was supposed to know but didn’t. Things had taken several unexpected turns and I was just too dazed to think of any of it.
Finally, a nurse gave us that first contact to LPA. We called right away. I didn’t know it at the time, but the woman on the phone was also on TV. I’d never seen her, or any other Little Person, maybe I did and just never thought about it. She made sure all of our questions were answered. Things started to make a little more sense. I found out where I could watch the segment that featured her and her husband. It started to hit home that my baby’s life was going to be very different. I wanted to know everything I could about my son and his life.
It wasn’t until we went to our first LPA conference, 5 months later, that I really felt as if I knew where we stood in the world. Everyone was confident about this life. No one made us feel out of place or snickered at our questions, even though they’d heard them so many times before. We blended in as if we’d always been there. The focus wasn’t on trying to fit in, it was just on having fun and being together. Now, I stand with them to welcome other new parents. Now, I can’t imagine our life any different.
Don’t get me wrong, it was still something for average stature parents to get used to. The buffet tables are lowered to comfortable height for the short statured individuals–about two feet off the ground. I needed to learn the etiquette, which I found out later, really doesn’t exist. Except for the fact that most consider the “M” word highly offensive, beside that, LP social faux pas are the same as any social group. (However, I always thought it to be more comfortable for some if they didn’t have to constantly tilt their head to speak with me. Bringing myself to eye level is something I try to do in tight spaces.) The one thing that I did have a difficult time with is their physical relationship to my son. Achondroplasia has very specific physical features. From their heads to their hands to their posture, other Achons share those features with my son. I don’t share that with him.
He realized it too one year. He was walking on his own already, though I don’t recall the exact age. We were at a dance during a fall Little People of America convention. The music was very loud and I was struggling to hear the conversation I was involved in, when I felt a tug on my slacks. Before I could crouch down to hear him, Jax had grabbed my hand and pulled me from the conversation. He took me around the dance, pointing out every person with Achondroplasia. There are many types of dwarfisms, he knew what some of these people had in common with him. Suddenly, he could see the similarities. Over the years it will come in bits and pieces. Something will trigger a new realization for him. For me too. It took me a long time to realize that the guidance I was expected to give as a parent was coming to me in random bursts of realities as well.
Later, I would find that no matter how close I am to him, I simply don’t know what it is to be a Little Person. I would imagine our relationship to be much like a single father raising a daughter; there are times that the father just doesn’t understand his daughter. She would need another female to talk to.
As he gets older, I know there will be places he will go where I cannot follow. I don’t know what it is to be a boy entering adolescence, let alone one which has a dwarfism. I watch him with the other boys playing ball…they are kind to him, they invite him to play. The first time he played basketball, he said, ” It was the most terrifying experience of my life.” Later he told me that he could sense that he was slowing their game down. He didn’t want to play after that, not with the tall kids, anyway.
My child has a good sense of self. That is he knows where his place is in the world and how others see him. He knows that other LPs see him in a different way than average stature kids. For one, he definitely rates himself higher in sports when he is with other Little People. Now that he is noticing girls, he rates himself higher on the eligibility list, as well. He has hinted that more LP girls find him attractive than the girls around the neighborhood do. Pretty intuitive for one so young. The years ahead will be filled with not only a new view of the world as he becomes a young man, but also realizations that he is a person of short stature. His own, very personal, dwarfism awareness.