Wednesday, April 28, 2010

Max is in a film!

This film was made for Club 21 where we have gone since Max was
just 7 weeks old. It's a learning and resource center in Pasadena
for children with Down syndrome and their families.
We go every Friday to first steps, open play where kids his age
can play and the parents can learn from each other and make

One of the most important things for me in the first months with
Max was to walk into Club 21 and not have to explain anything.
Everyone there understood Max and Down syndrome and had
similar experiences that I did. That was so necessary for me and
still is. the mothers who help run the open play have older children
so they could provide me with information, experiences and
resources that I wouldn't have known otherwise.

I cannot say enough about how important the women are who
put Club 21 together. Most of them are in this film. I didn't know
I was going to be interviewed that day! But I knew Max would
make an appearance or two. He is the first photo you see when
the film starts - that black and white photo of a baby is Max, and
there are MANY others of him and us throughout the film. I am
touched to have even a moment to share how amazing
Max is. And I am thrilled that this film was made to honor
what Club 21 is and has become for so many children and families.

What is amazing to me in this film is the shared story we all have of
learning that our newborn baby has Down syndrome. The thoughts
we had about what that meant and how misinformed we all were.
And how proud and honored we are to have these children in our lives.

Tracy Webb and Matt Webb ( not related ) did an incredible job putting this film

If you'd like to see the movie in a larger format you can click here

Monday, April 26, 2010

club 21 auction..or an excuse to put Max in a bowtie!

Can you stand it? *sigh* I'm dyin over here looking at all the cuteness in that bowtie!

Thursday was the Club 21 Auction and we used it as an excuse to try him in the suit he wore back when he was 4 months old to his Aunt Mary Jo and Dave's ANniversary party. Well - the shirt and vest and bowtie fit - but the pants - little did we know that they were really shorts! So he wore jeans and his fancy red shoes instead. I'm so glad I brought my camera!

And yes - thanks for asking...Max did get TONS of attention in that little outfit. Oh my gosh you should have seen it. And - he loved it. He did great that night. kept him out much too late and he was just fine with it all. Went with the flow. Smiled and laughed and hugged and then....melted down just as we were heading out at 10pm!

here is Molly looking beautiful!
And here is Jessica who I met at the Down syndrome conference up in Sacramento. All I remember is that she was standing there with a very large pink drink from Starbucks that had a lot of whipped cream on top and she was pretty darn excited about it. And here she is surrounded by her friends having a grand time.
Christopher. He told me that day that he won THREE gold medals in the Special Olympics this past week. I already thought he was an amazing guy...but really! THREE GOLD MEDALS!
Tim with his dad. Tim is looking so handsome in his suit!
Close up!
Nancy Littekin and Jackie Page. Nancy is the executive director of Club 21 and Jackie was key to helping get the auction to where it was that night. So talented.
Nancy with Tracy who made the most incredible film about our children. I'm still speechless. We were all interviewed for the film. She had 70 hours of footage and made it into an 8 minute film - it was beautiful , touching, emotional, educational, wonderful and a great opportunity for all of us to learn about each other even more. We all shared what our first thoughts were when we found out that our children had Down syndrome. It was hard to hear but also made me feel more connected. Then it went into how we got those ideas in our minds about what Down syndrome is and how our culture doesn't really show us the truth about Ds. And so we all had an opportunity to share what it really is and how our experiences of our children have changed the way we view Down syndrome. So touching. I think I'm still processing about the film and what I said on it. But overall it showed the amazing things that Club 21 is doing and how important it is to have this place for them to learn to read, to gather as a community, to play, to learn sign language, etc etc etc.....I hope the film touched some of the people there that had never really known about Down syndrome or maybe shifted a point of view. Tracy blew me away with her film and with the way she helped run the auction. She was in charge and she did it was grace and ease! She inspired me to make my own film about stay tuned people!

here is the auction committee. and yes - Max and I were both on the committee. I really enjoyed being behind the scenes and seeing it all come together and meeting these incredible women who spent so much time and energy to make this event happen. I was so impressed! I didn't do much since I had a little one with me all the time - but it was great to witness it all.
The room just minutes before the doors opened.
The branches on the centerpieces had little twinkling lights on them - so as the day turned to night the lights twinkled and glowed through out the room. I was looking around and thinking that each light represented a person who has Down syndrome and how each of them really does light up the room.

The night was a huge success - much laughter, joy, community, and fund raising! Plus great food, good friends and lots of love in the air. And Max! and no I didn't win anything in the auction - but I did win in so many other ways - not just that night - but Max in my life is the biggest prize ever. I know - you're thinking that was a cheesy thing to say, right? Well - I don't care! It's true. People were asking why he was with us - and why we didn't get a babysitter. Well - We don't have a babysitter yet. And we LOVE having him with us!

When we were driving home I was telling Jerry that it's true - you can't pick your family... I certainly didn't know I would be joining this family when Max was born - but it's true that they are there for me and I am so grateful to know each of them.

Wednesday, April 21, 2010

some photography news

Just a little photography news....

Sept 29th - Oct. 3rd I'll be leading a photography retreat in the Monterey Peninsula.
I cannot WAIT!
It's such a stunning part of the world.
We will be staying at Asilomar and will have our very own private building to stay in with our own common area with a fireplace and cozy feel.

The focus of the workshop is merging spiritual practice with photography. Meditation, journaling, photo exercises, discussion and exploring the area. All levels of photography experience are welcome.

There is so much to share about this workshop - but it's all posted on the workshop website so here is the LINK for more info....COME JOIN US!!!

I'm excited to be planning these workshops with my family in mind. I only want to go to places that I can bring my husband and son Max. They will explore the area on their own during the workshop hours and I will get to be with them in the evenings. It's the best of all worlds. Family, creativity, community, travel and love. Plus the added bonus of Jerry helping with any technical issues anyone has with their cameras - as I am not always savvy in that arena. Good thing I married a photographer! We make a great team!

If you are interested - sign up soon as we are wanting to have a small group and it will fill up fast! The workshop is only $385 plus your accommodations. The accommodations include 3 meals per day. It's an amazing price for a spectacular retreat.

The other news?
I had the privilege of photographing Miguel Ruiz - Author of the Four Agreements. He was my spiritual teacher for a long time and it was so great to see him again. I of course brought my husband and baby Max with me to the photo session. It was great to have it be more than just work.

The outcome of the photo session? A photo of mine was published on with an article Miguel wrote.

Don't you want to see it??

In Max news - yesterday I took him to his first swimming lesson. We were so late we only got 5 minutes in the pool - but it's very obvious that Max loves the water. It's hard to figure out how to take photos of him in the water - since I am in the water with him - but I plan to get some underwater disposable cameras like we had on our honeymoon in Maui - and try to get a few of these first lessons in the pool. The goal of the class is to teach him to put his face in the water - how to blow bubbles - how to kick - and just basically have fun and get used to being in the water. I don't think he is going to have a hard time - but I have been very nervous about it all.
I'll post back with photos next time and report how it goes. I plan to keep going regularly as I know repetition is key with children who have Down syndrome.

ok I'm off to go hang out with my little tomato......


Friday, April 16, 2010

Why I loved this week...

Here is Theo. As you can see - he is an old soul. I could look at him all day and feel as though he would at some point turn to me and give me some secrets of the world, or at least my horoscope. He seems wise beyond his years. Max loves to try to eat his face or at least lick his cheek. I love his mama Ruth and adore baby Theo. So glad we could see them this week.

There's Max thrilled to be with Ruth and Theo. And look at Theo - would ya? That face. Man is he gorgeous. ( and yes Max is too of course! )
I love how Ruth is looking at Max. I can tell she loves him. And I love that.
This week my friend Juli and I were finally able to meet with our kids at Huntington Gardens.
I met her at Club 21 when our boys were about 6 months old (?) and we hit it off instantly. Brady and Max are 3 weeks apart and both have Down syndrome. I always say that Brady is Max's best friend. But I also say that Max's favorite color is orange and that he prefers his hair long. I can't wait to hear what he has to say about all of these decisions I've made for him. But I am certain that Brady and Max will be friends for a long long time. We are bummed that we live so far away and they won't be going to school together...

We live about 40 minutes away from each other and so it's SUCH a treat that we found a day when all of the boys were well and we were able to fit it into our schedules
We introduced Brandon and Brady to the Childrens Garden. Brandon Loved the water features there and the tunnel! Brady and Max sat on the grass together and then lost it and I have it on video but - as usual - haven't carved out time to download it to the computer.....maybe this weekend??
There's Brandon on the left looking up and me and Brady is passed out!
And my gorgeous little Max passed out after a fun day with his buddies.

Such a great week!

Max started clapping with his hands together on Monday and he is taking more steps and so determined about it. the clapping happens every time I say "YAY!!!" or "ALL DONE!" or if we sing the clapping song from our Music class. It's really cool. I love it.
This weekend Jerry and Max are going to Club 21 for a conference and I am taking an art class.
we're heading to a birthday party, a softball game to cheer on a friend, and to have lunch with friends. Phew! Life is wonderful - full - and I haven't even started to fill you in on what's happening with my photography business - and a LOT is happening.

more on that soon.


all photos were taking with my iphone with the hipstamatic application. They aren't great any larger that you see on your screen - but I do love the effect.

Sunday, April 11, 2010

14 months and lots of catching up to do....

photo was taken this morning at breakfast - taken with my iphone. Love how he is looking at me. he is a few seconds away from his first nap.
Max's hand - again - another iphone photo

This was taken a few weeks ago in the morning. We love this time. When he wakes up the first thing he does before he even opens his eyes is Smile like he is having the best experience of his life. And I think he is in that moment. He basically puts his face right up close to you when you are asleep and waits for you to open your eyes and see him smiling at you. Oh I just LOVE mornings! I'm so glad we do the family bed and he is there with us every morning.
The eye doctor wants us to Patch Max's eye for 2 hours a day to help strengthen the other eye before the surgery. After meeting with 3 different eye doctor's we finally found the guy we like best. Dr. Wright! Yep that's his name. We really think he is RIGHT for Max. He just told us to patch for ONE hour instead of TWO. Max does really well with it. No complaints. Each patch has a different design on them. I had no idea they would look like this. This one has little fish on them. His surgery is July 28th. We'll keep you all updated on the details as we move along.
I took Max to the Arboretum one hot afternoon. We'd never been there before. Peacocks EVERYWHERE. I think he actually saw this one - the others were running past and he was too busy staring at his hand or at me to see them. He is so dang cute. Unless they made noise he didn't notice.

Here he is with his Speech Therapist Amy Johnson. We were told when he was just 7 weeks old to put our name on her wait list. it took until NOW to get up the list so we can finally get in to see her as a regular patient. Before this time we were seeing her every few months to check in - get some tips - and do a consultation type meeting.
This appointment was last week - she gave a very detailed written eval on his current development and gave us a lot of exercises to do with him to help support him in his speech.
Right now he is at 6-8 months development level - based on what we told her and what she observed. I think this is the very first time we really can see his delay since all of his PT and OT are on track with "typically developing children". All of his friends are starting to talk and he is saying Ba ba ba, Ga, la, Hhhh, and forming some babbling sounds together. I love listening to him babble and nothing that comes out of his mouth sounds anything like the word "NO" and I am grateful for that!

Last week we were able to see the Physical Therapist at Dynamic Therapies - instead of at our house. It's the first time Max got to work with Joe and all of that equipment they have there. here he is on the treadmill. He was all strapped in. He actually did better when Joe took the straps off and had him hold on to the handles. He worked on climbing up and down stairs, walking, trunk control, and I'm sure a lot of other things that I don't realize because I'm not a PT! We are going to talk with the Regional Center to change his PT from in our home - to at the Facility because we have much more opportunities for him to grow and learn there at this point - than in our house. For the past year it's been just fine - but Max is ready to walk and needs the extra help to gain his strength.

Right now he is standing up all the time. From a sit - to a stand - and then he takes one or two steps. If we take his hand he will walk about 4-6 steps. I videotaped it today. But it's a long video and takes so long to download that instead - for your viewing pleasure - I'm posting a video of him laughing and standing and then diving onto his mama - over and over again.
This is a daily activity at Camp Seiner! Enjoy!

Saturday, April 10, 2010

Thursday, April 1, 2010

Down syndrome in the 21st century

This is a great video. Hope you enjoy it.
More to come soon on all that is MAX!