Thursday, December 9, 2010
We met with other mom's who have boys around the same age as Max who also have Down syndrome. They all got together to meet us. I was so moved by this and by who they all are and their adorable boys! I'm excited to get to know them better. I found their blogs on the Down Syndrome Association of Utah website and reached out to a few of them and they were generous with their time and gathered together to answer any questions we have about the community there. Although we are still figuring a lot of it out it was refreshing to meet other mom's there and to have people to reach out to who are on the same journey. Here are their blogs:
Kristin - http://www.twodogsandafish.blogspot.com/
Emily - http://gigglesandscribbles.blogspot.com/
Tausha - http://dingman2.blogspot.com/
Kenzee - http://derekandkenzee.blogspot.com/
I found a few amazing places to eat Like Oasis which is right next door to a spiritual book store called Golden Braid Books. SO Super cool.
I LOVE the Downtown library and found that their check out is much longer than in LA. I was able to check out a DVD for Max for an entire MONTH and in LA it's a week or two.
We went to a Jewish Temple called Kol Ami and I must tell you I felt more at home and more interested in it than I do the Temple we've been going to here in LA. It has 350 families that are members there. The Rabbi is female ( hooray! ) and I hear she is super cool and we already know a few people that go there. Crazy small city that it is.
Oh and there is an Anthropologie there so phew - my love for the clothing ( and everything else ) at the store can go on and on!
I'm a member of Mom's club here in LA and I contacted the Salt Lake City group and got on their list so I know what events and playgroups are happening there. I wasn't able to attend this trip but plan to sign up as soon as I move there.
We visited the Jewish Community Center and let me tell you, I almost started to cry with delight when I spoke with the director of the preschool. It's so AMAZING there I cannot WAIT to sign Max up! They really WANT kids with different disabilities there - they actually seek them out because they know how much it enriches everyone's life to meet so many different people who have different ways of learning and growing in the world. They are into Learning by doing. And they ONLY observe and celebrate Jewish Holidays there. So every Friday they do Shabbat candles and the prayer, etc.
We met with a Pediatrician, Dr. Durham who has a daughter with Down Syndrome and he runs a Down syndrome clinic in Salt Lake City! CRAZY! He is going into Semi retirement and was still interested in taking us on as a client. I was so excited! He is a really great guy.
I also re-connected with two old friends of mine from very different chapters in my life. One I went to high school with and was wandering down the dark side with her ( ok it was during my goth, rebellious, sneaky, drinking and drugging days ok? )
And the other was from the Oregon Shakespeare Festival-where we both were assistant Stage Managers
(during my early sober, but still chain smoking cigarettes and working in theatre days )
Went to both of their houses and met their mates and their children and ate great food and told stories of old times. It was so amazing to sit there across from friends who knew me at such a different time in my life - both have different memories of me and both know things about me that I had forgotten!
My friend Greg who worked at the Theatre with me - is helping raise a 25 year old (also named Greg! ) who has Down syndrome. We met him and were FLOORED by him . SO smart, talented, well spoken, he plays 4 instruments and is a certified teachers assistant at the University of Utah Preschool. Unbelievable! I am so excited to know him and to have him hopefully be a part of Max's community. He could teach Max so many things.
We looked at a lot of houses and still trying to figure out what part of town to live in. The big question is because the kids 0-3 with Disabilities don't go to a regional center for services like we do here in LA - it's all done through the school district so it matters a LOT more which area we choose to live in. For me - I'm all for finding the BEST therapists and not worrying as much about schools districts yet because they are always changing. However - it would be great to figure it out and live in a great place with great services right from the get go. Not really living there at all makes it hard to navigate and I'm so glad I met the mom's I did who can give me some advice.
Laurel from the Down syndrome Association of Utah was a GREAT help and I cannot say enough about her. I cannot wait to meet her in person. She actually called me back with lists of school districts that mom's had suggested and which ones to avoid. Such valuable info. I want to volunteer there when I move there and work with her in any way I can to help other families and kids with Ds.
I wasn't able to get to any 12 step meetings because of the family gatherings that occurred unexpectedly on many of the nights we were there...but I plan on going and I have a friend who was very involved in the program there and has given me a list of friends to connect with and I look forward to that!
photo I took after we made our way back to LA after a 15 hour road trip!
Photo I took of me and Max to send to Jerry when he was in Salt Lake City working and we were home missing him.
Sunset in Los Angeles the day after we got home.
Our house in LA is on the market officially TODAY! Our first open house is this THURSDAY for Real Estate Agents and then another one this Saturday for the general population. Come on BY!
or better yet - BUY THIS HOUSE! ( I'll post our listing as soon as I have the link! )
It's a time full of change.... and acceptance is the key. So much is happening at one time that it could make my head spin and often does. When our house was being painted we had to pick up and head to a hotel on 4 different occasions because the painters neglected to put plastic up on the windows and there was paint dust covering ever inch of our house and ruining hundreds of dollars of Max's toys. The positive side was that after the discomfort of that - we have a beautiful house and Max was kept away from the potential troubles from the paint dust. It was an inconvenience but life is like that isn't it? It's all about how we deal with these little bumps in the road right? Some times I do it gracefully and some times I want to have a tantrum. I learn over and over that the tantrum just wastes time and takes away time from being fully present looking for the positive. The first day we stayed at a hotel and Jerry was in Utah I decided to take note of all the times things happened out of the blue that were amazing little "god shots". The gal who let me check in early ( 7:30am without charging me ), The gal who walked by me at the meter to let me know that I don't have to pay anything until 11am. The guy who happened to see me struggle with a baby and my bag and came over and put my bag in the car for me. The beautiful weather - etc.... It's really helped in this time of transition to practice being mindful and focusing on the positive. I am sad to be leaving LA and all of my friends and Max's services and community. And I'm excited for all the amazing things I'm finding out about Salt Lake City.
Thursday, November 4, 2010
First off - We went to Chicago. Max got to meet his Great grandmother Evelyn and the rest of his extended family from my father's side. We flew out to celebrate my Grandma's 90th birthday. It was amazing to see everyone again - and to introduce them to Max. There was a hired photographer at the event - and I was going to wait for those photos - but instead I will post this Video I made for the party. It's a video of my grandma's life and all the family in it. It's amazing to see those photos from her early days. And to see all of our hairstyles change through the ages!
It was incredible to connect again with family I hadn't seen in years. But even more incredible was the interactions with Max and his cousins. I am so happy that they got to meet. Seeing how excited they were to be with Max just made my heart sing! Bret and Marcy have the sweetest kids. Just Darling. They were all over Max - in a good way !
And that Ben is so dang cute I cannot stand it!! I'll post more photos of them as they come in.
The next day was a Hebrew Baby Naming ceremony for Max and his cousin Stella. Oh goodness is she adorable. It was a touching event. I think hearing a Rabbi read Hebrew and all of us saying Hebrew prayers we've said through our childhood makes me feel so nostalgic. Having a shared baby naming with Sloan and Robert's baby just felt so meaningful for me. And having the entire family there with us meant so much it brings tears to my eyes remembering the day. Thank you to my Aunt Lois who put the event together - made personalized napkins, lollipops, had an amazing spread of food, huge balloons everywhere, and that cupcake tower. Her home was filled with warmth and love from all the guests and Max got to spend time with his extended family. THANK YOU AUNT LOIS! and of course to Uncle Mark too!! And SLOAN!!!
After the Baby naming we went to Aunt Kitty's house to visit a little more with some of our cousins and to give Max a moment with his cousin Ben. Look how cute they are! Wish I had taken more photos!!
This year Max was a Cheeseburger for Halloween. Unfortunately he wasn't feeling so great so we didn't get to go meet up with his friends this year for trick or treating. I was so bummed. But we put him in the outfit and took this photo. We ran a few errands and let him walk down the aisles at Target for a moment or two. Not much of a memory making event - but at least we took this photo!
and in case you have forgotten what Max looked like last year for Halloween - I thought I'd share some photos! yep - we are representing all major foods that Jerry eats. And at the same time showing you the foods that I never eat. All in Max's costumes. Next year?? Pizza!
There is much more to tell you - shall I post it here??
when we got back from Chicago Jerry flew out the very next morning to Salt Lake City.
The company he has worked for - for the last 10 years - closed at the beginning of October and he was looking for a new job....One potentially has become available for him but it means MOVING to SALT LAKE CITY!
He is still in talks with them so I won't go into details yet - until it's a sure thing. But we both feel relieved that something has shown up so quickly, and that it interests Jerry enough for us to seriously consider leaving Southern California.
I've been busy looking up all things for Max, early intervention, pediatricians, Down syndrome community, playgroups, music classes, etc. And re-connecting with old friends how have relocated to Salt Lake City.
Jerry comes home today from another trip out there and we plan to go out there together soon so I can check it out in person.
I've been there several times during the holidays because Jerry's family is there.
Having his family there - right down the street - is something that will be so great for us and especially for Max. But I will miss my parents terribly,,,,although we've already discussed the possibility of having them visit every month - so if that's the case - it does feel much better.
And I will miss all of my friends here and the Down syndrome community etc etc....
Can't even really talk about that! Makes me sad. But we are both feeling very positive about the move and will keep you posted as we know more.....
Monday, October 11, 2010
Jerry turned 40 on September 28th and he thought we were going up to Monterey for one of my photography workshops - but we decided to cancel the workshop due to low numbers of people signing up. I took advantage of it and created a surprise trip for him. We went to Disneyland for 2 nights and we spent his birthday showing Max Disneyland for the first time. I thought that it would be memorable. Jerry LOVES Disneyland - and I HATE it.
h.a.t.e.....But - I wanted to give it another try - as a mom - and as a wife to someone who really loves it.
Max only went on 2 rides. The first was "it's a small world" and he would look out and then turn and kiss me - back and forth - look and kiss - look and kiss - he LOVED the ride so much. It was the highlight of Disneyland for sure!
After our 2 day adventure there ( which was REALLY fun! ) We went into Phase 2 of the surprise and we drove up to San Francisco and stayed in a rental house for 4 nights.
We took a walking tour, visiting my cousin Andy and his girlfriend Brienne, Went to the Ferry Building Farmers Market, tried the sandwiches at Tom Colicchio's restaurant, Tried a Mexican restaurant my friends in LA raved about called Gracias Madre, walked in different neighborhoods, took my cousins advice to try Anthony's cookies - and YES I ate a cookie...And YES they are to DIE FOR and went to Golden Gate Park and introduced Max and Jerry to Redwood Trees. The weather was perfect - sunny and need a sweater weather - and it was nice to explore the city from a neighborhood we'd never seen before. Jerry asked me to marry him when we visited San Francisco years ago - and we stayed in North beach. This time we stayed in Noe Valley. Much more baby friendly area - parks, lots of strollers, cute walking neighborhood etc.
I took some photos and made the video above to remember the trip. I also took some video of Max at Disneyland and on the road in the car seat rocking out to music from the movie the Breakfast Club. I'll post those later this week.
It's good to be back - and I'm grateful we were able to take this time and get out of town. October is our favorite month in general - and to travel - and to get married
( our 3 year anniversary is this Wednesday! )
I have much to report about how Max is doing - all the sign language he is doing now he is doing now and I'll get that up on another post this week as well. He was a dream to have on this vacation with us. He does so great in the car for many hours, he's not a fussy guy - no tantrums, dealt well with new surroundings, weather, different people, and different schedules. Seeing San Francisco with a baby is so great as we experience it from a new point of view and with new goals. No longer rushing around trying to see and do a zillion things - it was more about being a family and remembering who we are and what each of us needs or wants. I feel we all learned more about each other on this trip and got even closer as a family - if that is even possible??
Friday, September 17, 2010
17 years ago I found this cute little 5 weeks old kitten at the pound when I lived in Minneapolis.
She was the one who was sitting still in the back of a full cage of kittens, shaking a bit from fright. I felt an instant knowing that she was mine and I was hers.
She fit in my hand.
She lived with me in Minneapolis, Ashland, Portland, Corbet in cabin in the woods, San Diego and Los Angeles and for part of her life she shared me with this fine fellow of a cat Salvador ( aka cute boy )And at the end shared me with my love Jerry whom she didn't warm up to for about 4 years. She would lay on my pregnant belly and purr, sending the "little tomato" some love and warmth...and then came Max who just adored her and chased her around the house. She never got aggressive with him, she let him "pet" her even though he was rough and not able to be careful.
She loved to hop up onto my shoulder and sleep on me at night with her little wet nose touching my ear and I could hear her purring through the night.
She was my first child, my companion, and the one being who knew more about me than any other. She's been there through so much and loved me unconditionally.
I loved how she wrapped her paw over my arm when she slept in my arms.
I loved that face.
I loved that she wore an invisible tiara and at times she was literally pushed around the house on a chair that had wheels, because of course - she was royalty.
This was the last photo I took of her. September 15th 2010 on the front porch where she loved to soak up the sun. We had a vet that makes house calls some over at 8am because it was time to "put her down" as they say. She was suffering and her quality of life was diminishing. We just let her go where she wanted to and that ended up being under the tree in the front yard. I held her in my arms there as the vet gave her the drugs. Jerry and Max sat on the steps near by. It was a calm and peaceful event. She didn't struggle or have any reaction. She just went to sleep and then she passed away. She died in my arms.
The first day without her I think I was pretty numb. The second day - yesterday - was much harder and today - again I am feeling more feelings and grief and loss and remembering all the years we had together. I loved that Pretty Girl. Her absence and the silence without her is very loud.
I love you Pretty Girl.
Saturday, September 4, 2010
Decided to do another family bed video this morning.
I do love this morning time together.
The latest things Max is loving are:
1. playing pat a cake - he will do that over and over and over and over and over with us and he signs for it all the time. "more pat a cake" " more pat a cake"!! He will grab my hands and start to do it if I don't act quick enough!
2. Peek-a boo or "where's Max" you see it at the very end of the video when Max puts the blanket over his head and hides. he doesn't need any prompting for it - he just does it - and then I say " where's Max?" and hten he pulls the blanket down and claps while I scream " there's Max - yay!!! " He does that over and over and over too. So cute! I hide too and he comes over and pulls the blanket off. The speech therapist encouraged this so that we are doing back and forth activities together - and he picked up on it right away.
In other news:
Did I tell you that we had a door put into our bedroom that goes out to our backyard?
It was Jerry's birthday present this year as that is all he has been asking for - for about 5 years.
Now that we have that installed - we just LOVE the light it lets in and that - when we lay in bed - we can see the eucalyptus tree, pomegranate tree and plum tree waving their leaves at us as if to say "hello!" Now we have an easy way to get Max outside to enjoy our yard. It's been a long time coming and I'm so glad we finally did it! We plan to build a deck where the temporary step is - but for now - the step works nicely...
Now we need to figure out how to get the backyard baby proofed as we are finding more and more ways that Max can hurt himself as we explore out there.....so the process of creating a safe environment continues!
We are going to celebrate Max's 19th month on the planet by staying in and enjoying our central air! ( It's currently 100 degrees outside - not kidding! )
And then tonight we are heading to Cru restaurant ( yes I'm still vegan if you didn't already know - it's been about 5 weeks now and loving it ) and then to the photobooth across the street from there. Looking forward to that.
In other news - we've signed up for another season of Music Together which will be on Friday's at 8:45 - which means that right after class we will head to Club 21 for his playgroup. ( if you click on that you will see Max and myself at playgroup on their website - so cute in those red shoes of his )
And...I've started taking Guitar lessons! my friend Krista bought me a guitar for my birthday many years ago and I've never learned to play it. Max loves music so much I cannot wait to learn a few songs to play for him. I'm practicing 3 times per day for 5 minutes each ( as the guitar instructor told me to ) so that I can get over the pain and suffering that my finger tips are going through....I cannot describe how painful it is right now...and I am looking forward to the callouses forming - I hear in 3 more months or so....not sure I can wait that long but I am going to try it out.
Another playgroup is forming for some friends of mine that have kids. I'm SO SO SO excited about that. And I'm looking forward to Max having a even larger tribe around him and with him.
Max is learning more and more sign language and understands even more of what we are saying to and with him. It's amazing to watch him grow and I am so looking forward to seeing how all of the therapies, music classes and playgroups contribute to Max having a rich, joyful and amazing life...although I must tell you - he seems to be having a pretty good time right now!
oh - and on a side note - last week was my 42nd birthday and we explored Sunset Boulevard over in Silverlake. We found a real old fashion black and white photobooth and of course it made my day! I've decided that my 40's can't be anything other than the best years - because I've got two of the best fella's by my side! So much fun!
Tuesday, August 24, 2010
So I've heard from other folks around town - that once kids have the eyes surgery they just get up and start to walk! Seriously. I thought this was amazing but I didn't really know what to expect with Max....and guess what? He had the surgery on july 28th and on August 17th ( just 20 days later ) he just kept on walking without falling! I noticed right away that his center of gravity had changed and he was a lot more stable in his standing and his attempts at walking ( he has been taking up to 8-9 and sometimes 12 steps since around his first birthday ). Seeing it all come together is pretty amazing...and clearly Max gets a kick out of it as well. I'm jumping for joy for the little guy and I just love watching him be able to keep up with his friends at playgroup after months and months of him being left in the dust by all his cute girlfriends and guy pals. And - with walking also comes the amazing POWER NAP from about noon until 3 or 3:30. Oh man is this an incredible thing! I can stop eating lunch in 5-10 minute slurps while fearing he will wake up ( which is usually did )
AND I can make dinner - check e-mail - read - watch tv - call a friend - update my blog (!) and possibly do a little cleaning up ( but who wants to do that? Not me )
These days his schedule is
Monday - Occupational therapy 8-9am
Tuesday - Physical Therapy 9-10am about 30 minutes from home
Wednesday - Playgroup 9:30-11:30 which he just started to go back to because he isn't napping in the morning anymore. YAY for playgroup with his pals!
Speech therapy 1-2pm ( changing Sept 9th )
Thursday - Water therapy 4-4:45pm
Friday - Playgroup 9:30-11:30 at Club 21
Speech will change to 9am on Thursdays
and we have a few regularly schedules playdates with some friends and their kids each week as well.
ok - I'm off for a little playdate with a friend Max hasn't really seen in a while and I get to catch up with her mama and I'm looking forward to that and watching him walk walk walk walk walk walk walk walk walk walk walk walk walk!
Hooray for Max!!!!!!!!!!
Wednesday, August 11, 2010
My friend Cori up in Sacramento showed a video of this same game with her son Joey and I wanted to try it out and see what happened! ( Joey was born 4 days after Max and he has an extra chromosome too ....and when Cori and I met we found out that we actually grew up a few blocks away from each other and went to the same high school! We met in Sacramento at the National Down syndrome Conference when our babies were about 5 months old. Funny how Down syndrome connected two people who lived so close and never had met until now! )
I LOVE hearing my son laugh. I may have to go in for another laugh fest later today!
hee hee hee!
Tuesday, August 10, 2010
I love the light during my morning walks!
Just a quick post that TONIGHT I'm going to be giving a FREE TELECLASS!!
If you want to call in we will be discussing photography, mindful image making, finding inspiration and reconnecting with your authentic self through photography. P.S. there will be photo exercises I'll be sharing with you all and some secret treats just for those who call in....I want to tell you but then it wouldn't be a surprise now would it????
Don't miss this! - I would LOVE to have you join us.
Call in time:8:30pm eastern, 5:30 pacific time
Dial in number: 218-862-1300, Conference code: 538349
My friend Sheri Rosenthal and I will be doing this teleclass together.
She is an amazing spiritual teacher and I run my retreats with her company Journeys of the Spirit.
Hope to see you on the call tonight!!!!
Wednesday, August 4, 2010
week #2 of our photobooth Project - Thank you Claire!
Happy 18 months!
I can hardly believe it's been a year and a half ALREADY!
So much is going on for you that I need to take a moment and write it all down so I don't forget.
you are healing very well from the eye surgery that took place last week. Not sure if your eyes are totally straight - and we have suspicion that they are slightly off so we are taking you to the doctor Friday morning to check....
The day after surgery you got croup! You sounded like a dog barking when you coughed. Luckily it only lasted 2 days. The cough is still around but not at all as bad.
you are using sign language all the time and started weekly speech therapy to help you out.
your signs are:
see ya later
you understand a LOT more than this and it's so exciting to see you communicate with us and with people around you. You LOVE to wave hello and goodbye to everyone who meets you and you are still just a bright, shining, happy, easy, sweet, loving, smiling, joyful, fun to be with baby.
ok - you are officially NOT a baby - but to me you are still "baby max".
here you are a few days after surgery - clearly having a hard time adjusting!
I made a time lapse movie of our morning time together - taken just 2 days after your eye surgery. I SO love hanging out with you! Your papa and I love you so much and I cannot wait to show this blog to you when you are old enough to read and understand it. I hope some day to figure out how to publish this into a book for you. I tried once but realized I need some help with it.
Max, I cannot imagine my life without you.
I love you
just the way you are.
You are perfection.
You are a ray of sunshine.
You are my pride and Joy.
You make my heart sing out.
And I just love being your mama.
thank you for sharing your life with me. I love to see that sparkle in your eye and that smile on your face....ohh, that face! I want to pinch those cheeks of yours right now just thinking about you. Augh you make me melt.
I hope the surgery gives you what you need to live an even fuller life my darling baby boy. You deserve to have all doors open to you.
( and for you to be able to see them clearly! )
Thursday, July 29, 2010
My friend Valerie and my parents all were there with us during the surgery. It was a surreal morning. We were asked to give him a tincture of tylenol liquid mixed with Verced which is a type of medication similar to valium. It was strange to have Jerry hold him and while I fed him this liquid. It made me nervous. He got drowzy immediately. Very slow moving, very sleepy, very drugged out. This is what he looked like right after I gave it to him:
The anesthesiologist was wonderful. He was a warm fresh bright being. You know that feeling immediately when you meet someone - he had that something. Made me feel ok handing him over once we walked down the hallway towards the surgery room. Dr. Wright and his assistant were both there and I felt confidence in all of them. It was hard to watch him being held by other people we just met walking away from us. We held hands back to the lobby. My tummy was sick inside and I felt like there were earthquakes going on as the floor seemed to bend and shake every so often, but I was told it was just me.
My friend Valerie was the entertainment - and let me tell you - I was laughing so hard with her stories that my stomach hurt. So that, in between feeling that sick feeling about my son being "under" and "worked on" was a total trip - like a roller coaster ride in a dream where you know everyone but it's unfamiliar but familiar. I know that doesn't make sense but it was dream like.
here's valerie entertaining:
here are my parents - being entertained:
here we are trying to allow ourselves the gift of being entertained!
The surgery took an hour and when they called out our names we jumped and our hearts dropped. We were taken to the recovery room and waited there for what seemed like an eternity. I could hear him crying on the way over to us...the anesthesiologist carried him in to me as I sat in a deep upholstered rocking chair covered in a white sheet. Max had tubes connected to him and a bag of fluid the Dr. was holding on to. He handed Max to me and it was hard to see. He was crying and his tears were blood. I was dabbing the corners of his shut eyes with a little swab of cloth they gave to me. It was hard to hear him cry like that and to see that blood even though they warned me it was going to be like that.
Here is the photo jerry took right after Max was put in my arms:
I was so happy he was alive. Seriously - that was the big fear of ours that he wouldn't make it through the surgery. So that smile on my face - even though I do look a tad haggard (!!) - is just expressing my relief that he made it through.
The harder part for me was when the nurse took out the IV in his foot and took it out in such a way that it spurted blood all over Jerry's pants and on the rocking chair and Max howled in pain from that more than the eye surgery. I felt faint. I got quiet. I wanted her to fix that ASAP. She did but I had already gone into that mode of no return of wanting my baby taken care of and you better get out of the way lady!
We walked out in to the lobby and Valerie and my parents came over to see Max and give hugs. Max was crying and I was uncomfortable and we all headed out to the car so we could get this superman home.
Max calmed soon after we got to the car and slept the way home. Slept most of the day away. Never needed any pain medication. Only woke up to eat and then would go back to sleep. My parents - who were prepared to stay as long as needed - left around 3:30 because Max showed no signs that he needed anything!
here is a photo of his eyes after we took him home:
Here is the photo I took right after my parents left:
he slept through the night and today has been more of the same - content - no signs of pain - and totally ok. His eyes are red and bloody where the whites would be - but only on the inside part near his nose - not the part on the outside. I've been watching his eyes and they seem to not be crossing although the dark blood makes it hard to tell - especially because it makes me feel faint to look at that part for too long.
here is a photo of his eyes that I took today:
they don't bother him a bit - he isn't trying to rub them or touch them at all. Still no need for tylenol at all which has been surprising. We heard all sorts of stories about it being a very hard time after the surgery for many reasons - but so far
( knock on wood ) he is doing great. His parents are just suffering from a little cabin fever.
We have to keep him out of the bright light of the sun which is hard on days like today which are perfect summer days - and we snuck out at 6:30pm tonight to go to - guess where????
Here is the photobooth photos from this evening:
Tomorrow we go for a re-check at 7am and have all sorts of questions mainly about when he can get outside and run around at the park and when can he socialize again with his pals, can he attend his friend Bella's birthday party on Saturday and of course the most important question of whether or not the eyes are straight....I believe the answer to that last one can only be told over time as he needs to get used to his eyes being like this now - and the blood needs to clear up. I'm just glad we are on THIS side of surgery instead of THAT side. I don't like that side much. It's powerless like I have never felt before. I still feel overwhelmed with emotion when I have a moment to think about all that Max has gone through the last few days. Luckily I don't have many of those moments as we are trying to entertain him and pass these hours by until we are allowed out!
much love to all of you who lit candles, said prayers, sent well wishes and support. I love you all and Max sends you a kiss as he looks at you with both eyes at the same time!
Tuesday, July 27, 2010
Making this decision for surgery wasn't easy. It means they cut the muscles of the eyes and re-align them. yuck. ouch. no thank you. We met with a vision therapist who is against surgery but when we asked him what the success rate was with his type of therapy he said 50%.
We met with 3 different surgeons who all say the success rate is 80-90%. hmmmmm.
(It took three surgeons because we wanted to pick someone we felt the best connection with.)
Now, I'm all for doing LESS HARM - so I had to really think about what was less harmful...
Not doing surgery and hoping it works - or being more aggresive with our solution and being in a higher bracket for success. I want Max to have all the opportunites to live his best life ever so even though surgery makes me really really really uncomfortable - I am willing to go this route for the potential gains it will provide my son. Writing this makes me a little teary. I am just a tad over the moon for this little fella so the thought of putting him "under" for the surgery is scary no matter what the surgery is for.
So many of my friends who have children with Down syndrome had to go through their children having heart surgery the first days right after birth, and one of my friends son's has had 13 surgeries on different things including the one Max is getting tomorrow. I mean - I realize that it's not the same as heart surgery - but it's still intense to have to hand over your son to the doctor and the anesthesiologist - which of course brings me back to my spiritual practice even more - I mean - nothing is more powerless than this.
Thank God for all my friends in various types of spiritual practice and artists communities who have been there to send us love and support. I must say that facebook has been an amazing place this week for me to connect. I'm blown away by all the love from people who took Kelly Rae Roberts flying lessons class - and all of my friends in my 365 unravelling flickr group, and my dear friends from Minneapolis, Portland, the UK, Texas, etc etc etc....all day today I have been feeling so much gratitude for all of you. Thank you! I do feel you holding us!
My friend Clair suggested I do something as a ritual for the 9 days leading up to Max's eye surgery which is tomorrow. So I decided to take him to the photobooth every day. I LOVE this ritual and plan on going even after the surgery. Click on the photobooth photos above to see them larger. And YES I plan to take him to the photobooth the morning of the surgery! We have to be there at 6am so we need to leave at 5am. First stop - PHOTOBOOTH!
p.s. if you look closely you will see the day he got his haircut. SO SUPER CUTE!
There have been some wonderful events that past few weeks so here are a few to catch you up...
Max napping on papa!
Jerry's mom Marty came to town for a visit and we all went to the most amazing drum circle for kids that we have ever seen. over 150 people, lots of fun and we plan to go back regularly because....
clearly Max hated it!
That evening there was a concert at Huntington Gardens after they closed for members and guess what? We bought our membership in Max's birthday so here we are - Max again...clearly hates music!
Max started Water therapy once a week with his PT ( physical therapist ) Joe. And again - he clearly hated it. He was all smiles and squeals - he LOVES the water and he LOVES Joe so it's a great combo.
Today I bought Max a t-shirt with the Superman logo on it for his surgery day outfit. I think it's fitting. He is an amazing human. I am in awe of him. I love watching him become more and more of who he is. And I look forward to coming back here to tomorrow to share the success of his surgery with you all......
if you are up for it - light a candle at 7am pacific time - that's when Max's surgery is scheduled.
Friday, July 9, 2010
He has been walking for a while now - but is really getting the hang of it. Going about 6-9 steps or walking from the couch to the green chairs. It's amazing. But every time I try to videotape him. I get nothing. Somehow the universe aligned for me to get a little bit of what he does all day long...I thought the cracker would do the trick - but apparently a pool noodle was all he needed ( thanks Michelle! )
In other less exciting news than my son starting to WALK!!!!!!!
I only was able to post 3 journals onto Etsy today. Etsy is being a little fussy and isn't working so I'm going to try again over the weekend.
Here is a peek at the three I posted
You can find out more on the Etsy site. And soon - there will be MORE!
Thursday, July 8, 2010
I'm in the middle of prepping the photos of my newest journals and I thought if I posted one here and told you about them - it would help me get the project completed!
I have 6 right now that will be posted on my Etsy site by tomorrow afternoon.
That's the goal....and now you've heard it here!
They are moleskin blank journals with 3 different silkscreened images to choose from.
I can't WAIT to show them to you!
This one has a chocolate brown image on it. Love the rich color. I use these journals all the time now for lists, journal entries, photo ideas, drawing, business planning, etc etc etc...
....ok I need to get these photos cropped, listed and posted - here we go!