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.

I could not be more proud of this boy

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.

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.

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.

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!