first hair cut and a post I don't want to write

on Friday I took Max back to Amy's Playground where he had his birthday party. They have a gal there who does haircuts for kids. His hair is just a touch over his eyes now and I thought I'd like a trim just above his eyebrows because I think it looks good a little long.....the gal I told this to had different ideas.....

Here he is just before getting it cut. So cute.



here is how he felt just after he had the hair cut. Upset because the gal didn't listen!



Here he is looking super cute after the hair cut - however the look only lasted 2.5 seconds and now it just looks terrible. His hair grows straight down and looks like crooked bangs that are too short and just makes him look....heavy sigh....I can't even say how I feel about this hair cut. I HATE IT. so there. HATE IT. AUGH!
I am now on the lookout for baby hair gel - seriously - so that it stays over to the side like in this photo because if it isn't like that - it's HORRIBLE.....






ok
on a more seriously note

We took Max to the Eye Doctor last week and found out that he has Strabismus. Which basically means that his eyes are not lining up properly and they cross. Both eyes alternate so it's either the left one or the right one. rarely both although with Down syndrome it often looks that way.
The Dr. wants to do surgery within the next 4-6 weeks to cut the muscles of both eyes and re-align them.
I can hardly breathe when I type that out.
I am not breathing right now.
I cannot deal with this.
Surgery!?
REALLY!??!
ARE YOU SURE??????

So - we went to another dr yesterday who is not into doing surgery unless it is very severe. This one says visual therapy is the way to go. Glasses with special lenses and therapy in the form of play with his PT, OT and who ever else does any sort of therapy with Max regularly. He would work with all of them to incorporate special therapy into the mix to help him work on how he uses his eyes.
his feeling is that just changing the alignment of the eyes isn't going to change the way the brain thinks about how to use the eyes. You have to train the brain or re-train it.
He says success rate is about 50%
The surgeon says surgery is 80% success rate and that some need more than one surgery. um oh god. not breathing again.

We are making an appointment with another dr.
and we are leaning toward doing BOTH the visual therapy - starting with glasses AND then doing the surgery so Max has a little time to get used to using his eyes differently even before they do the surgery.
oh god this just makes me sick.
The whole thing makes me sick.

Jerry and I have been telling our Pediatrician for MONTHS that we think Max's eyes cross. So the pediatrician pulls out a small flashlight and points them into Max's eyes. and then draws two eyes on a piece of paper and shows us that the light is hitting both eyes at the same point which means he is not cross eyed. he sent us to an eye dr. that said that kids with Down syndrome look cross eyed and basically made me feel bad for coming in more than once to re-check. This was all getting on my nerves because my gut was telling me otherwise. So that is when we decided to pay out of pocket for someone out of our insurance network to get another opinion. Then we hear SURGERY. and not only THAT but that this should have been taken care of 6 months ago.

I'm talking with everyone about this and I hear so MANY stories about surgery that corrected the problem and that everything was ok and it all worked out. I'm hearing about different doctors that people have gone to and who people really liked.

This all helps - but at the end of the day
I have to hand over my baby to someone so that he can be "put under" for surgery. No matter how much research I do - nothing can make me feel ok/good/better with this.

We will keep you all posted on what we decide to do - and how things are going.
All I know for sure is that Max is the most amazing human I have ever met and I want to do everything I can to give him all possibilities for the best life ever. Even if I am uncomfortable and feel like I might die just typing this all out here now.
It's terrible this surgery thing.

I'm off to eat another cookie - that's what I've been doing ever since I heard the news. Eating cookies and not breathing.

birthday party video

Ok so - we celebrated Max's birthday just the three of us - on his actual birthday. You already saw the photos and video we made posted earlier. Then our family had a party for him which I still need to post. And then a week later we had a party with all of his friends. Phew. Lots of partying.

Here is the video of the birthday party we had for Max at Amy's Playground in South Pasadena. It was a beautiful day the party was filled with his friends and it seems as though everyone had fun!
I wish I had taken more photos and I wish I had time to really use my favorite lenses and get into it more - but - I was busy partying with my baby and my husband and all of our friends. There were 17 kids who came to help us celebrate - and their parents - and some friends of ours we've known since junior high or high school. It was a great bunch. Thanks to all of you for coming. It meant the world to us. And thank you to the grandparents ( of course!! ) - for being there as well. the place was packed and all I could hear was happiness. If there is a sound for that - that is all I remember hearing, feeling and experiencing. I think Max felt the same way.

more to come soon!

Enjoy the video.

xoxox
c

Inspiring!

I'm still working on getting Max's birthday party photos and video up here - so in the meantime - this video really needs to be watched - and then shared with everyone you know.....you might need some tissue!

it's really good.

Finnian's Journey - A great video!

I visit this blog regularly and LOVE reading how Lisa speaks about her journey as the parent of Finnian who has Down syndrome. What I didn't know - was how amazing her entire family is!

Just watch the video and see for yourself.

Then - pass this video on to everyone you know.

Spread the word to end the word.

here is her blog if you want to read and learn more about them.

http://finniansjourney.blogspot.com/

and yes - there are more photos from Max's 2 birthday parties coming up shortly!

And a LOT of milestones happening around here

more soon!

xo

c

Max's first birthday recap

OK!

Lots of photos so I'll just summarize here and you can scroll down to the video at the end.

We started the day lounging in bed like we always do. Lots of snuggling. I hung up the birthday banner that I made for him. I think it turned out great! Then off to Danny's Farm which is a petting zoo near our house. Max was able to see animals for the very first time and pet them. We've taken him to the zoo and wild animal park and he was basically sleeping or just looking at us! So this was a real treat. Watching him see a pig, goat, donkey, bunny, rooster all for the first time ever. Amazing to see. Then off to Marston's for lunch and then Dot's cupcakes for a birthday cupcake ( three of them - one for each of us of course! ) Then we went to Huntington Gardens. They have a special garden just for the kids and it is unbelievable! We bought a membership when we got there and plan on returning there often. It is a magical place. Art galleries, all types of gardens, cafe, trees, birds, just beautiful. Then we headed home and opened presents and ended the festivities with is little cupcake. We had so much fun. I'm so glad Jerry took the day off to spend it with Max. Oh - and we videotaped Max and I reading a book together - watch how good Max is at turning the pages. We did that before we headed out for the day.

and YES the guys wore matching orange sweatshirts. I didn't participate but they sure looked cute. I always hated seeing people do that - but when it's YOUR baby and YOUR husband and they are hanging out together - I must admit that it's pretty darn cute.

What a fantastic day his birthday was!

Max! You Are ONE Year old TODAY!!!

It's midnight.
I just finished this video.
A review of Max's first year.
Max was born at about 7am on Feb 4th 2009.
I cannot believe a year has gone by.
But I have proof here in the images.
I don't have words right now to express all the thoughts and emotions I have.
So this video will have to do.




Planning on spending the day with Max and Jerry today.
Low key - all about celebrating Max -
maybe a ride on the swings at the park
Maybe a trip to a petting zoo
maybe a nap together in the afternoon.
lots of photos - for CERTAIN.
video - oh yes!

stay tuned people....more to come.

Love you baby Max.

You are my precious little angel.

HOORAY!!!!

The Regional Center just called us to let us know that Max will now be able to get Occupational therapy ( which helps with fine motor skills). And that it's going to be in home services!

HOORAY!!!!!!!!!

EVERYONE has been telling us that he should get BOTH Physical therapy AND occupational therapy but we weren't approved to get OT and every time we talk with his feeding therapist who is the head of the OT department at the place she works ( going to keep that off the blog ) she told us that he really doesn't need it because he is doing really well.

That's GREAT of course to hear. WE LOVE that Max is doing great.

AND we feel that it can only benefit him to see an OT.

Even if just to give us suggestions on ways to help him develop his skills further.

So we start THIS FRIDAY!!

I feel renewed belief in the regional center!

We didn't have to fight, appeal, write letters, go to court, make any phone calls...nothing.


What a GREAT early birthday present for Max.

YAY!!
HOORAY!!!

I'm just THRILLED.

xo
c

help bring Sophia Home

Oh my gosh. Look at how adorable she is!
That's Sophia. She has Down syndrome and she is an orphan living in an orphanage in Eastern Europe.
There is a family here that is raising money to adopt her and bring her here.
They have a website where you can learn more about her and donate any funds you feel you can spare.
It costs something like $25,000.00 to adopt her.
She's spent the first 2 years of her life in an orphanage and I just LOVE that this family wants to help her have a better life.

Can you help?

http://www.savingsofia.blogspot.com/

getting ready for the birthday!

Well, it's getting really close to his birthday and I'm still working on his Birthday Banner.
I've been going to a place called Common Thread Studio in South Pasadena. It's on Mission Street which is hands down my favorite street in town. I could go on and on about all the cute places along this street - but that's not why I'm here typing!

Anyhow - Max and I have been going there this week so I can spread out the project on one of their tables and work work work. The owner is great and she has her dog Luka there to entertain us.

Today I finished cutting out all the letters. I felt so accomplished. This is my first sewing project - so each step is monumental.

Now I need to either hand sew each letter - or learn how to use the sewing machine.

Not sure which will take longer and I only have a few days left.

The blog was going to be made into a book for Max - however that turned into a bit of a nightmare. it would have been 381 pages or something like that. Which meant major editing. And the photos were too small to publish so I had to go and find the original photos - all 180 of them. um......my hair was turning white more rapidly just thinking about this.

So - I've decided to go through it and find tid bits from each month that feel important and making a short version of the blog for him.

I won't get that done by his birthday and I have a feeling he won't notice!

oh - And I'm sure you are noticing that I'm starting to post about my photography here.

Why you ask? Well - I decided to merge my art blog and my baby blog - so you will find posts pertaining to every facet of my life from now on. I cannot keep each part of my life in neat little compartments. My life doesn't look that way - so why force things into different blogs?

grab your camera and join me on the Oregon Coast!

June 10th -14th I'm leading a photography workshop on the Oregon Coast near Manzanita.

Here is a little information about the workshop:

Please join us on this amazing photography workshop and spiritual retreat with award-winning photographer Catherine Just. We’ll be relaxing for 4 days in a beautiful oceanfront home set along the stunning Oregon beach. As we observe and listen to the ocean – we’ll have the opportunity to delve deep into the heart of our own creative process.

Each morning we’ll gather together to share our thoughts and feelings about our creative process and where we would like our photography to take us. You’ll be given photo “assignments” which will encourage you to explore the hopes, dreams, and wishes that spring from your hearts deepest desires. Heading along the coast, we’ll visit a variety of terrains and vistas presenting us with unlimited photo opportunities. There will be plenty of time to expand your consciousness, explore the assignments, work on personal projects, walk along the beach, journal, or simply take a quiet break. In the evenings we’ll gather again for dinner and discuss what has been revealed to us that day.

Open to all levels of photography experience – so don’t be shy!

ONLY 5 SPACES LEFT!

Book your space now

Click here to find out more information and to book your space.

I can't wait to see you there!

Perfect for a mama who needs some "ME" time.

xo

*c

Joy

http://freshpickedwhimsy.typepad.com/fresh_picked_whimsy/2010/01/joy.html

click the link above

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 day...at 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 etc.....you 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.

xo

*c

Why I LOVED my day today so much....

one of the naps he took on me today. I love watching him sink deeper into his nap.

Now this is bliss.

for ME!

I took these with my iphone about 2-3 minutes apart.

listening to the rain.... Husband home from work because of the holiday....lots of ginger tea....taking my online Mondo beyondo class ( yes I took it in October and loved it so much I am taking it again! )and finishing up my 20/20 e-course ..... loads of laundry....chatting with friends through e-mail....catching up on my favorite blogs...all helped make this day pretty wonderful, warm and cozy....

but the best part of all is watching my baby boy nap and feeling him breathe on my tummy.

precious.

still in denial that we are inching closer and closer to his 1 year birthday.......I was looking through "old" photos of him at his birth and through the first months and I cannot believe how time is flying by and how blessed I feel to be this little boy's mama. It sometimes still shocks me that I am a mama....like "how did I get here" kind of moments. Not in a bad way - just in a "wasn't I just in college in Minneapolis wearing vintage dresses and combat boots - thinking my two nose rings were cool?" " wasn't I just living in Portland with Marcella and Joel, working at Portland Center Stage and complaining about something while NOT helping my housemates clean up the place?" or wait " wasn't I just living in San Diego working with Miguel Ruiz and helping organize his power journey's to Teotihuacan? " and YES all of these memories from my past are real - I've had MANY different versions of this life and I must say that this one is my upmost favorite.

I love you baby Max.

thank you for napping on me today ( twice! )

xo

*mama

guess who decided it was time to stand up?!!!

There he is - this past weekend - standing up!!!!
He was so impressed with himself he kept standing - and then falling on his butt and getting right back up.

It's only about a 2 second stand - his Physical therapist thinks he will be standing on his own by his birthday....3 weeks from now.

he's doing so so great. We are of course proud parents.

In other news - the countdown to his first birthday begins!
I'm testing out cupcake recipes, making a birthday banner out of clothing that he wore this year that no longer fits him, making a book out of this blog, creating a slideshow of photos from this blog and planning out what we will do on his birthday.
So far my ideas are:
Danny's Farm
Photo booth
And just hugging, kissing, laughing, loving - you know...the usual!

We are having TWO birthday parties. One is for his friends at playgroup and their parents ( our friends ), and the other is for family.
I'm sure those of you who know me aren't surprised by the fact that there will be lots of parties going on here!
But on his actual birthday Jerry and I plan to spend the day alone with him and pick a few adventures if it's not raining.

I cannot believe he is almost ONE already......!!!!!!!!
I might pass out.

Max is 11 months old today.....!

happy 11 months in the world!

How did you get this old so fast?????????

Probably by smiling and laughing every day

enjoying your life

loving being held and hugged and kissed

and now

you're cruising on the couch...which for those without kids means that he pulls up to stand on at the couch and then holds on to it as he walks along it to get to the other side. AMAZING!

You're saying BA BA BA which is more like BOW BOW BOWWWWW.

and today you were saying DA DA DAAAA

LA GA and all sorts of other words you like to make and hear.

You're into peaches, pears, apples, sweet potatoes pureed. all with a lot of rice cereal added in to make it thicker so you can get ready for the next step with your food.

Monday you have PT with Joe once a week

Tuesday Infant Stim with Talar

Wednesday anything goes

Thursday Mom's club playgroup at the park

Friday Club 21 playgroup

we've been going to the park almost every day so you can have time on the swings. You love it so much. You can't get enough!

Here are some more photos.....

here is Joe the Physical Therapist working with Max last week. Learning to sit with knees bent and feet planted on the floor and working with both hands at the same time to pull things up and put things down.



here is his cousin David Just, meeting Max for the first time at the Rose cafe in Venice. Max's second time in the high chair.
Max really enjoyed David. He kept reaching over to touch his arm and looked at him while he talked.



Christmas day down at Grandpa Jerry's house with the Harbaugh family ( Jerry's aunt and uncle and all the cousins ).
We do secret santa with them. It's fun to be with this large family. Max wore a onsie that said " Best Gift Ever" And that is no lie!

So many more photos and stories....more soon!

Happy Birthday Max! One more month and you will be a YEAR OLD! I can't believe it.
You are my sonshine.
xoxo
c