Thursday, August 27, 2009

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?

13 comments:

Noel said...

Dr. Morris is the best. She is a rock. She loves our Ws kids. I have met with her twice but have talked to her several times. She truly has saved me from falling off the edge I hang onto several times. Most recently with Abi's back surgeries last year. You will love her because she does care. I am so happy that you have found that lifeline.You deserve it!!

Kevin and Lynne Smith said...

Jessica tells me how grateful that her son Simon was sent to her so that she could serve him. She has had problems with him. Not like the problems you have had being the parent of a child with Williams Syndrome tho. The path that we are given is not necessarily easy but do you realize how blessed Nico is by having you as his mother. Someone who loves him no matter what, someone who will move heaven and earth to find the answers, to lead the way. You, my dear, are an Angel

Rachel said...

My heart is wrenched from your tales of Monday, and indescribably happy for the rest! Huzzah a million times over!

Katie Aldrich said...

And don't forget that Niko is helping so many other kids with Williams syndrome by participating in the study. I'm so glad about the change in direction, though I was poised to extoll the virtues of North Carolina to you!

Belkycita said...

Oh, I can't tell you how wonderful your news are. A loving teacher and a group of people that know and want to find out more about Nikko and his specific problem.
My love goes to you and your super fun son, who has the cutest smile out there, yes I still remember it. I am sure those that get to know him remember it too, and arent' afraid of him... ok.. maybe a little :-)

Laura Oler said...

I'm so glad to hear of the happy 2nd day and the kind teacher and good news for the tests. Your first day sounds like such a nightmare. I hope both the teacher and the new studies help Nikko to feel happy and comfortable so that he can progress. Take care.

Natalie and Damon said...

Just for reference, we are not and never have been afraid. Niko and Nina are amazing and adorable. I am sorry that when you first moved in I was too caught up in my own drama to be more of a friend. I have been praying for you to find answers, and my eyes tear and my heart rejoices that things are changing for the better. I will do anything to help, and so will many others. Hang in there.

Elise Jones said...

Hooray! Hooray! Hooray! I'm so thankful to hear of your amazing breakthrough, particularly after such a rock bottom day. Best wishes for much more upward progress in the days and months to come. You'll be in our prayers.

Yardley Crew said...

Yeah! You deserve all the miracle sent your way! We love you guys!

Teresa and Shawn said...

We have taken Clare to see Dr. Mervis (who is kind of like Dr. Morris' counterpart on the East Coast!), and they are such incredible people. They truly LOVE our children and WANT to help us be the best parents we can for our kids. I am so glad you were able to find both a teacher who will take care of Niko and a doctor who will take care of all of you!

Jeff and Ali said...

We are so excited about all the great news! I'm so glad that you like Niko's teacher and I think I'm still in shock over the doctor. We are sure anxious to find out how the initial meeting goes. We will continue to keep you in our prayers. We love you guys! Give Niko and Nina a big hug and kiss for me!!!

thegiver7 said...

i am a mom of an 8 year old boy with William's and i just stumbled upon your blog. I would love to know how you handled your son's hypercalcemia?

Mercedes said...

Hi thegiver7. I'm happy that you stopped by. :)

Niko's hypercalcemia happened when he was pretty young and still learning how to eat. We switched his formula to one called Calci-Low, and took special precautions with his diet. I think he could have 1% calcium per serving of food, or something crazy like that. It was especially tough because everything made for kids is fortified with calcium.

But the thing that made the most difference was an IV drug called Pamidronate. I googled it, and this is the first site that came up:

http://www.drugs.com/mtm/pamidronate.html

We gave it to him through an IV at least two or three times, and it brought his calcium level right down. He eventually outgrew his hypercalcemia, but we still keep an eye on it. He's getting his blood draw this month, actually. Not all hospitals seem to be familiar with Pamidronate, but if I learned anything through this experience with Niko, it's that we need to keep politely clamoring until somebody listens to us.

I hope that helped! :)