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?

The Universe Tilts Sharply Part I

I can tell you already that this post needs to be written in two parts. It's extremely long. It's emotionally draining. We'll begin with part 1: Niko's First Day of School.

So he was transferred, yet again, to another school, because his last school doesn't have the self contained first grade program that he needs. This is his fifth school in the last three years, including two different summer schools. New teacher, new staff, new bus drivers, the whole deal. So we did that whole thing. "Yay, Niko, you get to ride the bus! Yay, you get to meet a new teacher!" He's so incredibly anxious, and we tried to get him used to it beforehand. "We're buying you new shoes for school! We're buying new clothes for school!" We're also looking over his IEP, and putting together an introductory scrapbook for the teacher, and crying out eyes out at night in nervous exhaustion and dread, and everything else that we do right before school. But in front of Niko, we focus on the positive. You know how it goes.

My father comes down to visit. Truth be told, he's come down about every other weekend because I have just been at the breaking point. Dad cleans my floors and fixes broken locks around the house. He was here for Niko's last emergency room visit. He was here for all of this.

The bus pulls up on Monday, and Niko climbs on with very little drama. Hooray! All of our preparation has worked! The bus driver belts him in, and we tell Niko that we'll be there when he gets off of the bus. I still haven't met his teacher, and there has been zero communication about the school. We barely found out where he was going, for crying out loud.

So Dad, Nina, and I hop in the car. We drive over to the school and beat the bus. We look for his teacher, but Niko isn't on any of the rolls that we see. We stand by the buses, figuring that we'll meet his teacher that way.

His bus eventually pulls up, and he comes off of it calmly. I'm so proud of him! I ask around for his teacher, but nobody knows. We're sent to the office. Niko takes one step inside, thinks it's a doctor's office, and flips out. My father, bless his heart, picks him up and carries him outside, where he tries to calm him down for 45 minutes while I'm fighting with everybody inside the office. Fighting. That's how it felt. They have no record of him, no paperwork saying that we should be there. IEP? The person I'm talking to doesn't speak enough English, so I'm waiting for somebody else to come help me. There's a huge line. Niko's screaming outside. Nina's holding my hand and waiting patiently.

Part of the problem is that I should have registered earlier, they said. Friday was the last day. I told them that I didn't know anything about registration. I told them that I looked up their website online, and it was dead. The links didn't work. It hadn't been updated since late 2008. I said that I looked for information about an open house, about registering, about meeting the teacher. I said that I looked to see whether or not the school had uniforms. I looked to see about school lunch, and whether or not they served breakfast. This information was not to be had. I said that they didn't understand the preparation that went into everything, that we spent weeks gearing Niko up for school. I told them that he was going to be scared of school now, that he wouldn't get on the bus anymore. I told them that, believe me, if there was something that I could have done to avoid this problem, I would have done it. I don't say that I knock myself out doing it. I don't tell them that I wake up about 20 times a night, worrying about something that I might have missed, that I'm worried they'll lose vital paperwork, that there's something more that I should be doing.

She told me that all the information that I needed was in the newsletter that they sent home. Everybody in the school district got this newsletter.

"I didn't get the newsletter," I said.

Oh. Maybe if I had gone to the website, then...

Didn't she understand what I just told her? I did go to the website. There was no information there. This could have gone on for hours, but I finally held up my hand and said, Please. Tell me where we go from here. Can I register him now?

Paperwork was missing. It couldn't be found. This is exactly one of the things that I feared, and I fear it because it happens to us all of the time. I ran all over town and finally got copies of everything that they needed. Dad and I took the kids home. My father called my mom and said that all of the kids were crying. He meant Niko, Nina, and I.

So Tuesday was Niko's Do-Over. His second day of school. I said, "Niko! Let's get ready for school!" and he cried. The bus came and he collapsed to the ground, screaming. I cursed everybody silently. I hated them all. I tried not to cry and told him that it would be all right, and today would be much different, and I would meet him there. He existed today. Whether or not they had all of his paperwork, the woman at the office assured me that she could find enough to get him in. He pressed his face to the bus window and cried. I promised that we'd meet him there, just like yesterday, only better. I put on my dark glasses (to hide my puffy eyes) and what my father calls my "Dita Von Teese" lipstick. I armored up. I went over to face them again, determined to work everything out by my sheer force of will.

And then everything changed.

I'm Big Brother. And an Essay.

I was talking with my friend today, and we decided that I should actually (gracefully and politely) barge into the school on Monday. I will be kind but also upfront. "Hello, I would like a chance to meet everybody. I'm concerned that there wasn't an Open House. I'm concerned that the site hasn't been updated and that there is no communication going on. My son was hurt at an earlier school, and I will never allow that to happen again. My name is Mercedes and it is very nice to meet you."

Also, there's an essay that is going around, and it's absolutely lovely. I'd like to post it here. Permission to post is granted provided that the document is kept intact. It is. Enjoy.



Hey everyone,

For those of you who don't know me (I'm only an occasional poster) I am mom
to Michelle, 9 years old, microecephallic, athetoid/spastic CP, Cortical
Visual Impairment, Seizure disorder -- and CUTE! Ok, now for the reason I'm
posting.

To make a long story short, earlier this week a question was asked by some
nit wit official as to why there weren't more parents (of special needs kids)
involved in the local PTA and other issues that have come up that directly
involve our kids. His question, which was passed on to me was "Where are the
Parents?" I went home that night, started thinking - and boy was I pissed -
and banged this "little" essay out the next day on my lunch break. My
friends thought I should share it all with you, and I apologize for the
length, but I wanted you to have it all. By the way, I took copies of this
to the school board meeting that night, gave it to a couple of influential
people and it WILL get around.............
Where are the parents?

They are on the phone to doctors and hospitals and fighting with insurance
companies, wading through the red tape in order that their child's medical
needs can be properly addressed.
They are buried under a mountain of paperwork and medical bills, trying to
make sense of a system that seems designed to confuse and intimidate all but
the very savvy.

Where are the parents?

They are at home, diapering their 15 year old son, or trying to lift their
100 lb. daughter onto the toilet.
They are spending an hour at each meal to feed a child who cannot chew, or
laboriously and carefully feeding their child through a g-tube.
They are administering medications, changing catheters and switching oxygen
tanks.

Where are the parents?

They are sitting, bleary eyed and exhausted, in hospital emergency rooms,
waiting for tests results to come back and wondering: is this the time when
my child doesn't pull through?
The are sitting patiently, in hospital rooms as their child recovers from yet
another surgery to lengthen hamstrings or straighten backs or repair a faulty
internal organ.
They are waiting in long lines in county clinics because no insurance company
will touch their child.

Where are the parents?

They are sleeping in shifts because their child won't sleep more than 2 or 3
hours a night, and must constantly be watched, lest he do himself, or another
member of the family, harm.
They are sitting at home with their child because family and friends are
either too intimidated or too unwilling to help with child care and the state
agencies that are designed to help are suffering cut backs of there own.

Where are the parents?

They are trying to spend time with their non-disabled children, as they try
to make up for the extra time and effort that is critical to keeping their
disabled child alive.
They are struggling to keep a marriage together, because adversity does not
always bring you closer.
They are working 2 and sometime 3 jobs in order to keep up with the extra
expenses.
And sometimes they are a single parent struggling to do it all by themselves.

Where are the parents?

They are trying to survive in a society that pays lip service to helping
those in need, as long as it doesn't cost them anything.
They are trying to patch their broken dreams together so that they might have
some sort of normal life for their children and their families.

They are busy, trying to survive.

Sue Stuyvesant
10/15/96

I Have a Story!

I'm working on an introductory scrapbook for Niko's teacher. They don't have a Meet and Greet or anything, which is uncomfortable. I wish I could find out who his teacher was in advance and have a meeting with him or her. It seems insane to me that isn't the case. I looked at the school's website, and it hasn't been updated since late 2008. This doesn't restore my confidence. But I'll send him to school with a little scrapbook saying, "Hi, I am Niko! I'm sweet and happy, like the alphabet, and I'll bonk your head so don't get too close!" Because otherwise, I'm going to get 400 irate calls saying that Niko bonked somebody. Which they would be on the lookout for, if I could only get them that information beforehand. *sigh*

But! Something very excited happened today! (Besides Nina flushing her dress down the toilet. That was just...yeah.) I wrote a story and it was accepted by The Pedestal Magazine. It's the highest market that I've cracked yet, and I'm just very excited. It's one of my favorite stories that I've written, so I was extremely pleased that they accepted it. Anyway, it's up! Please feel free to stop by and read it. You can find it here. If it's something that you like, come swing by A Broken Laptop and tell me. Or tell me even if you don't like it. I'm always interested in what people have to say. Otherwise I won't improve.

:)

A New Year, A New School. And a Journal.

Niko starts school on Monday, but we only just found out where he's going. This will be his seventh school...two schools in our last city, and five schools here. (Including two summer schools.) All this talk of a routine and keeping things consistent? Hahahahha! The only school that he returned to was the one where his teacher was hurting him.

His new school is fairly close. They think his name is Nikdai, and its rated 5 out of 10 stars. But what can we do, except pray they'll do the best that they can while we do the same at home. I think I'm a better mother during the school year, when I'm not trying to provide every need for both kids. I think I'll like myself better. Maybe I'll remember how to smile.

Another sleepless night last night. It occurred to me that I miss my personal diary, which fell by the wayside as I write my two blogs. After all, can't I just print them out and call it a diary? Except that I'm never totally 100% honest on the blogs. 99% most of the time, yes, but there's always that small thought or feeling that is too close, too personal to go winging its way through the universe. This is as it should be, but I long to resurrect my journal and write down everything, knowing that it's a completely safe haven. Because there are days when I'm not so certain that I can do this. I've noticed that my friends are dwindling. I have nothing left to give them. When a child says, "I don't like Niko" I can't shrug it off like I used to. I act like I understand, and sometimes I do a little, but mostly it hurts. We order our food to go because it's easier than the show that goes on in restaurants. It takes a village, and we're absolutely isolated. These are the things that I would tell my diary, only in more depth, and with a little more ranting, and probably a lot more tears.

On the other hand, I'd also tell it that when I saw my children napping together, I thought that they were the most beautiful things in the world, and I felt badly for everybody who wasn't their mother. If only we could all be so lucky every now and then, I'd write. To parent children who are so exquisitely wonderful.

Better Days Make the World Go Round

Yesterday was so sucky! And today is the opposite.

My parents left today, but first Mom and I went out to breakfast. We laughed and talked and started hitting the Coke pretty early in the AM. Always a good sign. Also, I received an acceptance for a short story that I wrote! It's called "The Container of Sorrows" and it's going up in a pretty respected e-zine. It's probably the biggest market that I've cracked so far, and I just adore this magazine's fiction! So I'm really happy. It also qualifies for the Science Fiction and Fantasy Writers of America organization that I'd like to join. So yay! I wrote about it here I'll link you when it comes up. It's a very delicate story, and I'm quite delighted.

I just found Niko sitting on the bathroom sink, and I immediately pulled him off. "Do you remember falling?!" I asked. "Do you remember the hospital and the IVs and that whole ordeal?" He looked at me and smiled. Good kid. Good, crazy, thoughtless boy. We had a birthday party for Nina, and now she's pushing her new Tinkerbell doll around in a stroller. She's such a little mom. She's also no pushover, as demonstrated by her shouting, "You may NOT!" when I tried to do her hair. Today is a much better day. :)

Hello, ER

This blog post was supposed to be all about the 10k that we ran on Saturday (yay!) My parents came down to watch the kids during the race, and we celebrated Nina's second birthday. I was hoping that this visit would help pull me out of the sadness and despair that I just can't quite shake.

Today Niko was standing on the bathroom counter, and he fell off backward. I heard him hit the linoleum floor, and I just flipped out. I thought I'd see him with pieces of his skull missing or his limbs all bent backward. I still haven't gotten over seeing his broken leg last year. Thankfully, he seemed all right, but his bones are brittle from the hypercalcemia, and I couldn't ask him about a headache. So Dad and I rushed him to the ER, which required sedation. He pulled his IV out. He threw himself around. It was a nightmare, but the CT scan said that everything was all right. He's been throwing up all night due to the anesthesthesia, but he's in good spirits.

Seriously, it's one thing after another after another after another. When did life become such a test of endurance? On the other hand, we've always come out of everything okay. We're really very lucky. :)

Oh yeah, and the race was fantastic! Luke and my brother ran it, too, and we all really had a great time.

S'okay.

So Nina is just fine. A little groggy, perhaps, because I woke her up every two hours last night, but fine. The goose egg has almost disappeared, and life is much better here.

Except that I blew Niko's world to pieces by flipping his mattress over. Too much change! Too soon! He fell apart, and now he's snuggled against me as I type, listening to music. That seems to put everything right.

We rented Coraline for the night. I'm looking forward to it.

The Goose Egg

It's a crazy time. Luke's still doing his busy season, and last week he put in his 40 hours by Wednesday. The kids and I spend a lot of time looking at pictures of Daddy.

Today I said, "Enough!" I hired a babysitter. I called my friend and asked her to lunch, if she could drive. Afterward we went to a matinee, and guess what was playing? My Sister's Keeper. Most of you know that I'm not into chick flicks at all, and most certainly not tear jerkers, but we went, and I cried during the entire thing. I remember a time when Niko was going into kidney failure, and there was discussion about whether our next child would be a "donor child". In fact, I think I mentioned it briefly on this blog. But we are lucky, and after his levels were stabilized, life was beautiful for our son. Nina gets to be Nina. She isn't spare parts for her brother. But even if that had to be the case, she's such a gracious, giving little girl that I know she'd do anything to help Niko in a heartbeat.

I'm on pins and needles right now about her. She was outside on the patio, and I don't know if she fell or if Niko pushed her, and I suppose it doesn't really matter. She hit the concrete with a sickening sound, and immediately formed the biggest goose egg on her forehead that I've ever seen. I picked her up. I cuddled her. I gave her some children's Tylenol and put some ice on her forehead. I looked up "goose egg on forehead" and everything tells me to check her eyes, to check her actions, to see if her speech is slurred. She seems all right. She stopped crying quickly, and was pointing out dogs, cats. "Ruff ruff, meow," she said. She was alert, and was tired after a while, but it was bedtime. The advice I found said to let her sleep, but wake her up periodically. Luke's on his way home from work, and we'll wake her up when he gets here. I feel that she's all right, but I'll keep a darn close eye on her. I'm afraid it's going to be a very long night. Luke will give her a blessing, and that will give us peace of mind.

The good news is that my parents are coming down this weekend so Luke and I can run a race. His race starts at around midnight, and mine starts at 1:00 AM. We'll run by Area 51 during the full moon, and last year it was such a mystical, beautiful thing. I'm looking forward to it, and I'm excited to see my parents. We'll have Nina's birthday party while they're here.

It made me feel better to see so many blog posts devoted to goose eggs. We all feel like our mommy license should be revoked. We all feel inadequate. It's comforting because I feel that way a lot. There's strength in numbers, isn't there?