The Universe Tilts Sharply Part II

I find Niko's teacher. I walk up and say, "Hello, I'm Mercedes. I'm Niko's mother." I hand her the introductory scrapbook that I made, and also a thick binder on Williams Syndrome that my friend Natalie has put together for her. The teacher's face lights up. "Oh, thank you!" she says. "I've never heard of Williams, and I was trying to find information on it last night." She says that in all of her 30 years, nobody has ever done anything like this for her. She's southern. She seems very kind.

I explain some of the Niko highlights quickly, warning about the head-bonking and telling her how to calm him down. The buses pull in, and he refuses to get off. He's clinging to the doors. His teacher runs over to him, picks him up, lays his head down on her shoulder and hugs him. He's almost as big as she is. He wraps his arms around her, and I'm glad that I'm wearing my dark glasses because I'm crying again. I realize that I have an advocate. I realize again how extremely tired I am.

I turn and leave them, going back to my father and Nina. They are holding hands and watching us quietly.

We come home and work on the house. I'm actually smiling. I keep telling Dad how relieved I am after actually meeting her. Dad is playing with Nina before he starts cleaning our carpets. And then the phone rings.

It's a woman who works in Genetics. I had written the Lili Claire Foundation a heartbreakingly/pathetically desperate letter just the day before. I told them about Niko, that he's fallen through the cracks, that he's shuffled from school to school like he doesn't even matter. I told them that he doesn't speak, and that he's regressed dramatically from where he even was as a three year old. I told them about the abuse allegations against his teacher, and that's when he started to slide. I told them that I needed help and if they could just point me in the right direction, I would be so grateful. That's the thing; I feel like we've exhausted every resource. It's a bunch of dead ends. I don't mind doing it myself, because we've been doing it ourselves this whole time, but I don't know what else to do. I need somebody to show me where to go.

I feel like I've failed my son. I feel like moving to this city has done nothing but hurt him, and the guilt of that is crushing. It's been a good move financially, but is the suffering worth it? My son has suffered. He's suffering now, and I can hardly live with myself knowing that I don't have the capacity and resources to make it stop. And where is my daughter in all of this? I'm shredding myself trying to keep them both happy, both loved, while Luke works hard for us. It isn't working. We decided that perhaps we needed to move in order to save Niko. The family is more important than anything else, and if it means selling the house, if it means uprooting again, we'll do whatever it takes. And there's a whole new source of stress. Finding a new job? Finding medical care? New schools? Selling our home in this economy? Getting our children used to a new place all over again? Going through the "This is our son, these are his needs" song and dance routine at church again? He's finally fully accepted there. They are so kind, but it took two years. My stomach hurts just thinking about the magnitude of it all.

But where was I? Oh yes. The phone rang.

She had read my letter and discussed it with Colleen Morris, who is a geneticist and one of the foremost authorities on Williams Syndrome. They want to meet with Niko. I thought we'd have to wait months and months to get an appointment, but they want to meet him in two weeks, and have him take part in a research project. They asked for a copy of all of his medical records. She asked about his heart, about his calcium levels, and it was so bizarre to have somebody ask about things that nobody really knows about. "Yes, he has pulmonary stenosis. Yes, aortic stenosis. Yes, beta blockers and he had hypercalcemia. Yes."

She spoke my language. I was no longer alone.

She said that it would be a lengthy appointment, and they'd like to run tests. Take pictures. They know exactly what to look for. They know much more about the syndrome than I do. When I warned her that Niko would be anxious, she was very calming and said that they were familiar with Williams behavior, and there were girls there who would play with him.

She's not afraid of my son. I've been trained to think that everybody is afraid of my son.

Then she says, "This is a very important part. Since this is for research, all of these tests are absolutely free to you."

I thought that my legs were going to give out. I actually had to sit down. I didn't know what to say. When I could finally speak, I just managed to say "Thank you." Thank you seems so inadequate. How do you say thank you to somebody who might have just changed your life? Because that's what this is. This is life changing information. These are life changing tests. It's a lifeline. It's the direction that I needed. It lets us stay here without guilt. It gives us a chance to have hope again.

Somebody told me that it has already been life changing, simply because my outlook has changed so dramatically. Monday was the culmination of three months of misery. I had hit my breaking point and was very nearly broken. And then on Tuesday, miracles occurred. Two of them: Niko's kind teacher and this life-altering phone call. How did we get to be so lucky? How did we get to be so blessed?