Saturday, January 23, 2010

playing catch up....

My iphone had a bunch of photos from the past month that I hadn't posted yet - so here you go....

The first two photos are of my niece Tabatha and nephew Troy meeting Max for the first time.

The photo below is of Sevi and Max seeing each other for the first time in MONTHS. Sevi is probably Max's first friend. We met them when Max was just about two or three months old.
His parents - Kristin and Fernando have a very similar birth story to ours and it was SO nice to meet another family with a baby who has Down syndrome who felt the same way we do.
ie: didn't get tested during the birth because we wouldn't have done anything about it if we had found out during the pregnancy that our baby had Ds, and didn't want to put our baby at any risk of miscarriage ( even if just 1% chance ) just to find out something before hand.

the photo below is from new years eve the rose bowl. Max is seeing his first rose parade float. They put them all outside and we can watch them finish them up. It was amazing to be that close to them and see all the detail. Max slept through most but woke up at the very end to see this one. his eyes are still half shut from being so sleeeeepy.

Here is a family photo I took as we got started on the train ride at Wild Animal Park on Jan 2nd. We met with Cousin Andy and his girlfriend Brienne who visited from San Fran. Love that you can see Max's little hand on Jerry's shirt. how cute is that?!
And Max seems to sleep through a LOT of the places we take him. Here is proof. At the petting zoo we were surrounded by deer and he slept like a lamb.
At the Zoo last weekend Max again - slept through it all - until he heard the flamingo's yelling at each other and then he took notice. This is the first ( and only ) zoo animal he's ever seen....

We started Music Together class last Saturday and I was SO filled with Joy watching Max be filled with joy that it brought me to tears. I was SO happy for him that I thought I might burst open. I think I did actually. We went again today and again - BURSTING. He just LOVES it. He squeals with joy and is smiling from ear to ear. He pumps both arms up and down in the air at the same time. I MUST try to get this on video.
During these first two music classes I have wondered " what do those other parents think when they see Max for the first time? Can they tell he has Down syndrome? Do they have a negative opinion about people with Ds? Do they feel uncomfortable or curious or judgmental? Do they feel sorry for him or for us? "
At this point I realize that everyone can tell he has Down syndrome which is still weird for me because I usually don't see it. I just see Max. But when I'm around people who've never met him before, I introduce him and then it hits me that "oh....right....they might be thinking - Ohhhh he's a "special baby" or a " happy baby" or a "retarded baby" or a "waste".....and it KILLS me that there are actually people out there who think this way but there are actual facebook pages dedicated to people who hate people who have down syndrome. yes go look it up.
And if you are on twitter - look up Down syndrome. You might want to throw up when you read what people say there.
I feel that I was given the most perfect child - I feel so proud to introduce him to people. I think he is beautiful, sweet, fun, joyful, precious, full of life and wonder...I could go on and on.
But I do get triggered when I'm in a new situation and Max is the only one with Down syndrome and I wonder what point of view other people have. Not that I would stop going if there was someone there who thought something negative about Max. Just the opposite.
Remember - it's ME - the rebel...I'm not going to leave to make you all feel more comfortable in your little bubble ! I'm going to stay and show off my Max and if there happens to be someone who thought one way about Ds. I assure you they will leave feeling uplifted and amazed and in LOVE with Max and start looking more at each individual as a human being - instead of putting people in a "box" and generalizing about what they do not know.
Believe me - I'm no better than the ones that judge.
I judge too.
Not people with Ds - but I do judge. I judge myself, I judge that girl walking down the street wearing that outfit that I think is ridiculous, I judge my friends at times for their choices, I judge my parents ( hi mom! ), etc get the idea.
It's something I cannot feel holier than thou - unless I am free from it.
But I do feel it necessary to advocate for my child and for others who aren't treated equally based on the way they were born, or the way they learn, or the way they talk.

Sometimes when someone looks at Max for the very first time - I can see them register something in their minds about him and at times I feel like bursting out crying. I wish I wasn't as sensitive/ intuitive but I can actually feel it in my body when someone is thinking something about my son.

I know it's their problem and all that - but I do notice that at times it really bothers me and when I walk into a room of parents who all have what is called " typically developing children" I feel different than when I walk into a room with parents who have a child with Ds. I don't want sympathy, Sympathy for WHAT? But I can feel that from people.
I don't know about you - but I'm guessing that if you had a new baby and people looked at you with sympathy - I don't think you'd like it.

anyhow - it's a strange world out there - but I do know one thing. The world is a MUCH better place with Max in it. I hope that people who judge what Ds is will be changed by his presence.

ok - there is my attempt at a "quick" catch up post.
thank you for stopping by.


Anonymous said...

I can remember when my friend had her daughter and Lilli has downs. It was undiagnosed, they were not even in the risk factor. Quite frankly, I just did not know how to "be". I never been in a similar situation. After as much deliberating you can do in about 5 hours I went to hospital (they expected me to come) and gave my friends a hug and said: This is very new to me, I will need you to tell me if I am behaving ok or what you want me to do.

Lilli is now 12.

I have met many parents of down syndrome kids since and found every single one of them to be utterly different - just as with non-down-syndrome kids.

Yes, there are people out there who have disgusting views (on pretty much anything) but one must not even consider them. I always live by giving everyone the benefit of the doubt. It is ok for people to not know how to react, even if they behave odd at first.

You are doing the right thing by giving people the chance to get to know you and Max. This is the way to forge a better world.

Catherine Just said...

sounds like your friend is lucky to know you!
I too have many friends who love Max and I don't have to explain or feel uncomfortable around them. Thank goodness for friends!!! My life is abundant with them and so is Max's.

Children who have Down syndrome are the same as children who don't. They all deserve to be treated with respect, love, kindness and devotion.

All children deserve to be here and be included.
in school, in sports, in theater, in work, in college, etc.....

Kelly said...

Catherine, this is such a great post! Landon will be "1" on February 11th. On occasion, I too, catch a glimpse of someone looking at Landon and wonder what they are thinking. Not sorry for me is my hope! I sure am not sorry! Our children truly are blessings and the world "IS" a better place because they "ARE" in it! We experience these feelings and emotions because they are after all......part of our journey (this is how we live, learn, love and grow)!

Ds is such a small part of Landon's life. We are a very busy family of 5 involved in school, sports, etc. As a matter of fact, Landon's social life is alot busier than Maybe even busier than most typical kids! You are a great mom who clearly is proud of Max as a whole (as you should be). Max is one lucky little boy! As long as we have positive people in our life and surround ourselves with lots of love.........our boys will be just fine!

Keep us posted on the Music Together classes. Sounds like lots of fun! I've heard of it in our area (I think I'm going to look into it). Landon loves music too!

Anonymous said...

A great post Catherine.

I'm so glad you like Music Together so much. We love it too.

I get how disgusting people can be and the judgment stuff too (get it!) and it is always a struggle. Your willingness to look at your stuff around that honestly helps us all. So thank you for that.

Also want to say that for us, when we go somewhere and there is someone with Ds, generally we are happy. I say generally because as your first commenter said, the parents of Ds children are all as different as any parents and sometimes I don't (JUDGE) like the parents. But generally, I am happy because there is such benefit to diversity and it is so underrated in our culture. Max does indeed bring a whole lot to the table that the "typically developing child" (whatever the hell that means, I know a lot of kids and they are all over the board in terms of all types of development) doesn't. Not the least of his attraction to me is the absolute love and outpouring of his parents and awesomeness of how you are presenting him to the world. It does make a difference. For as many crappy people as there are, there are many more others who agree with you that every child is a blessing and the more we treat them as such, the better the whole world is.
I'm sure there is sympathy in some of the looks you get and damn, that sucks. But you just keep showing them how awesome it is to be Max's mamma and they will see and that ripple will change things. You are part of something very, very big. That is exciting and promising.

Love you so.