Sunday, November 15, 2009

Constant grief

A friend of mine once said that having a child with a disability is like living in a state of constant grief.

Some days are okay, and then it hits you and you desperately feel the loss of the child you thought you would have. Today is one of those days for me.

Most days I am able to focus on the progress he is making, the joy in his laughter, the beauty of his eyes.

Today I notice the awkward shape of his head. How his eyes cross. How at the age of three, he looks at my lips as I say "Mama, Mama, Mama" over and over and over again, but he cannot make any sound but a moan. As I give him a bath and he splashes and laughs, I wonder what he will be like at 12, and if i will still have to bathe him and put him in a diaper.

I think of my other kids at three, walking and talking and learning to ride bikes and I wonder if Oskar will ever be able to do those things.

Today I grieve the loss of my baby boy.

Tonight I talked to my 10 year old son, Max and told him I was sad and he said " You know what Oskar is,Mom? He's Oskar." And he's right.

Oskar has no idea that not everyone wakes up and has 50 seizures every morning. He has no idea that there is anything wrong with him. He is happy and loved and has everything he needs. And most days, that is enough for me.

Just not today.

Friday, August 21, 2009

46 xy del 5Q 14.3-14.3

We all probably learned about genes in biology. Some guy named Mendel I think. Something about sweet peas and cross breeding genes. I forgot about it, until Oskar was born and suddenly it became very relevant to me. When I tell people he has a chromosomal deletion, I get a lot of blank stares. A look I am sure i would have had myself two years ago. So here is short tutorial on human genetics as I understand them.

Our DNA is composed of 46 chromosomes. 23 pair. We get one from our dad and one from our mom. So we all have two 1st chromosomes, two second etc. They are the things you might remember from that biology class that look like are little worms. some are short, some are longer. Each chromosome carries a couple hundred genes organized in rows called bands. They are the little bits of information that determine our hair color, our eye color, height, I.Q. They switch off and on in the course of our development and our lifetime and make us who we are.

Every single cell in our body has this DNA in it. Every single cell has all this information in it's center.

In Oskar, ONE of his 5th chromosomes is missing one little line of this information. Band 14.3. 10 genes. Out of 20,000 in his DNA chain. It's amazing to me that this one tiny piece of information, missing on just one of his chromosomes can make such a difference. But it's missing in every single cell of his body and it has made all the difference

It makes you realize what a miracles we all are.

Thursday, August 13, 2009

Stripey: Cat with a problem

The other day we went to Mc Donalds and Maddie got a beany baby in her Happy Meal. A little cat she named Stripey. ( He has stripes, you see) He had a tag attached to him and Maddie opened it up and started reading it out loud . The first sentence was " I'm a cat and that's cool!" Maddie started giggling after she read it and looked over at me and said " It's like he's drunk or something!"

Where does she get this stuff?

Divorce and other natural disasters

Maddie was playing in a dollhouse the other day at her therapists office and all of a sudden she messed up all the furniture and tossed the people all over the house. Kim asked her what happened in the house. Maddie said " there was a tornado". Kim asked her if everyone was okay, to which Maddie replied;" No one knows yet."

I think that sums up the feeling around here. We are all in one piece, but thrown about and waiting to see what will happen next.

P.S. If you see Maddie, don't mention this story, I'm not supposed to know.

Wednesday, May 27, 2009

Soul installation

Today I had a portion of Oskar's soul re-installed.

It started a few months ago when a friend of mine told me to go to a woman who does channeling assisted therapy. She had a story about Oskar, and whether you believe this kind of thing or not, it's a great story.

In Oskar's most recent past life he had a horrible accident that left him paralyzed from the neck down. He even needed a tube to breathe. He was so upset and angry about this, that when he passed from that life, he immediately jumped into another body instead of spending the time he needed in the astral plane to process that life. Oskar's problems this life are a combination of the universe needing for him to learn the lessons he needed to in an imperfect body, and an overlay of anger and frustration from his past life that doesn't belong here. Anyone who knows Oskar knows he screamed for the first year of his life. I can't tell you how many cranio-sacral people told me he had some kind of anger he was carrying around. So now here's the spooky part. Oskie was born with a scar in his neck that looks just like a tracheotomy scar. Doctors remark on it all the time and ask me if he ever had one.

This lady sent the part of Oskar's soul that needed to process the anger back to the astral plane and told me that it would be ready to return in a few months. So today, we went back and had the soul re-installed. She said it was hanging above his head and was very excited to get back in . She felt that his soul was committed to this life and excited to get to work.

I think me and this new soul are going to get along famously.

Thursday, April 30, 2009

why divorce is good for children

Yesterday was Max's birthday. Al emailed me a picture of the surfboard he got Max. Surfboard? Fuck you. I got him a puppy. Top that!

Saturday, March 14, 2009

The upside of pneumonia

In the end of February, Oskie was admitted in to the hospital for pneumonia. he tested positive for a virus. They kept telling me he had something that sounded like "Human metamucil virus". I didn't care, all i knew was that he was having a very hard time breathing and he looked so pale it was scary and he slept for 16 hours straight. We were in the hospital for 6 nights. So this all sounds awful, but here is the upside. The doctors put him on steroids to reduce inflammation in his lungs, and it stopped his seizures. Oskie has had between 50-150 seizures a day for the last two years. I kept telling all the nurses and doctors and they were non-plussed. I finally asked for a neurology consult and now we are trying this thing called steroid pulse therapy. Steroids are very bad for you, but if you can get your dose down low and only have to give them every few days, you can stay on them for 1-3 years without significant side effects. So Osk had been seizure free since march 1st. He is laughing and smiling like never before and I am so hopeful! Hooray for pneumonia!!!!

Tuesday, February 17, 2009

Looking for Gato

In my twenties, oh so long ago, I had two cats named Gato and Cujo. We were very close. I was really crazy about them. I suppose I was not very careful with them, though because they got lost a lot. Cujo especially. One time he was lost for a week until I found him closed up in the utility closet under my neighbors house. Another time... well, I'll make a long story short, but I found him after looking every day for three weeks. He was five miles away from where I lived in a small hole in the drywall of a chinese family's house on Clement street in San Francisco. When I finally got him home, he looked pissed that it had taken me so long. Another time, Gato disappeared from our house in Mill Valley. After a few days, a neighbor told me that some people down the street had moved away. So I stole mail out of their mailbox, found their new number in the phone book and tracked them down. They had taken Gato, thinking he was homeless( he apparently spent a lot of time at their house talking trash about me). They kept him in the garage, but he had run away into the hills in San Rafael, and they had no idea where he was. That weekend, My sister Jennifer, my brother-in-law Ben and I spent every daylight hour walking around that neighborhood shaking boxes of kibble, calling Gato and posting flyers. Late Sunday evening, I remember hanging our last flyer at Scotty's market. At least 5 miles away and down in a valley below where Gato had disappeared. We all went home defeated. Two days later, a lady called. She had seen that VERY LAST FLYER and Gato was in her yard. WE FOUND HIM!

So why am I telling this story? These experiences have had a profound effect on me. The life lesson I learned is that, well,the cat is out there. You just have to keep looking.

This is the way I feel about Oskar. I keep looking for the person who is going to know how to help him. I truly believe that the cat is out there. I don't know if there will ever be day when I will give up. I almost gave up on Cujo , and all I had to do was intimidate a crazy chinese woman and get into her crawlspace. Some nights I cry because I feel like I can hear the cat, and I don't know where to look any more . Some nights I can't sleep because I can hear the cat and I can't wait to get up the next day and start looking again.

I will find the cat!


It has been a very exciting week around here. Al and Maddie made a video last summer when we were up at a cabin in Northern Minnesota. Maddie found an old book in the library at the lodge and she had such funny things to say about the pictures, Al filmed it. We showed it to our friends and family this summer, and thought nothing more about it. Last week, Al put the link on his Facebook page and all of a sudden,  Maddie is all over the internet and TV. She's had over 3 million hits on yahoo and you tube, and last friday she was clip of the week on the Soup. She was also on the front page of Yahoo and on about a million websites, including Boing Boing and Funny or Die. We are just cracking up and can't believe it. Last nite she had in interview with a reporter from the Boston Metro and tonight they will be playing the video on TRL on MTV followed by another interview with a producer at the Bonnie Hunt show to see if they might be interested in having her on. Now my favorite offer so far is an off-off broadway director in New York who watched all of Max and Maddie's videos and wants to talk about collaborating on a script with them. I can't even get them to collaborate on cleaning the basement, so good luck with that. 

Saturday, February 7, 2009

Friday, January 30, 2009

I was overserved

Last month I got bombed. Not kind of drunk...full-on blacking out, throwing up on my husband ( who probably deserved it) partying like I haven't been out of the house in 15 years drunk. I spent the whole next day crawling between the toilet and my bed. The kids were incredibly sympathetic. Sympathy I did not deserve. They brought me breakfast in bed and wrote me get- well cards. Ironically, they treated me with much greater tenderness than they had a month before when I had surgery. The next day, I was still not feeling right but pulled myself together enough to get up and run some errands. One of the stores we had to go to was closed by the time we got there and in my second-day-hangover-shame-spiral, I said " oh man, I can't do anything right". Maddie, my optimistic child answered from the backseat " That's not true, mom! You sure know how to get drunk!" 

Friday, January 23, 2009

When they say you inhale your food, they don't usually mean it literally

It's been a hard week. Oskar has been really congested for the last six months and I have been to the allergist and the pediatrician and the pulmonologist and just haven't been able to figure out what is going on. On Wednesday he had a swallow study, which is a test where they have you drink barium and then x-ray as it goes down and it turns out that Oskar is aspirating fluid, which means that it is going into his lungs instead of his throat. They are having me thicken his fluids. It looks like he is drinking jello, but I am just devastated because I'm not sure what it all means. I feel like this is a new problem, and I'm scared. I feel like he is getting stronger in every other way, so I don't know why all of a sudden his swallowing reflex would deteriorate. I know life isn't always fair, and I try to believe that the Universe has a plan, but somedays it's sure hard to fathom what it is and why it has to be so hard. 

Jonas Brothers, Smonas Brothers

Some of you may know that Max is in this thing called School of Rock. It's music lessons and at the end of 4 months they do a concert. This semester the theme was hair metal of the 80's and Max did his first lead vocals. It was Awesome! Max played keys on "Final Countdown" and a few other songs, played guitar on " I hate everything about you" and sang lead vocals on "Gypsy Road" and " On with the Show". Now, this isn't really my kind of music. Some of my friends may be familiar with these songs (Nadine), but its a little back parking lot for me personally. Unfortunately, I don't think they will do a concert of Joe Jackson, Madness, English Beat and Jackson 5 songs. The next concert will be the Doors, I think sometime in late April or May. You should come! 

Monday, January 19, 2009

Mother warriors

Okay, as far as being a performer and a comedian, I really dislike Jenny McCarthy, but as a mother and an advocate for Children, I have to admire her. This is from her book and I am putting it up on my wall. 

A mother warrior is a mother who hears there is no hope for her child and, instead of retreating and mourning, breaks down walls, weaves her way through obstacles, follows her intuition even when people tell her she is crazy. She is a mother who believes in hope. A mother who believes in miracles and is able to carry on with strength and determination, even when her partner doubts her and offers no support. A mother who never gives up when she keeps hitting dead ends. These are the women who will continue to open the door so future generations of children don't have to suffer. These are the mothers with hearts of gold and shields made of the strongest armor. 

Saturday, January 17, 2009

Oskie's First Day of School

Oskar started the transition program into school this Friday. It was an hour and a half and all his therapists and teachers from the school district were there. By all accounts it went quite well. When I came to pick him up he had three teachers with him. One reading to him, one positioning him and one observing. I'm worried he's not getting enough attention. 

Once again, I have to express my gratefulness to teachers at the Edina School district Special Ed program. They are fabulous and we are so lucky.