Spread the word to end the word

Family portrait with the iphone...


photo taken today as Max sleeps in his new Maya Sling. I can hear him snoring - it's adorable!


photo taken last Monday when Jerry went back to work after 6 weeks off for Paternity leave.


photo taken yesterday at the Rose Bowl. He looks so happy while he sleeps and listens to the birds chirp, and the wind blow softly through the trees
**

Today is the day people - March 31st. The day we spread the word to end the word. the "r" word.

To express what I mean about this - I am posting a letter from John C. McGinley who writes about it so well.
p.s. if you know someone who says the "r" word a lot please consider sending this blog post to them. ...
**

Spread the Word to End the Word
A personal message from John C. McGinley
Hi, I'm John C. McGinley. I'm an ambassador for the National Down Syndrome Society, and today I'm teaming up with Special Olympics to bring you a message that's important to me.

John C. McGinley and his son, Max
So many times in life you are asked to change...
Change your clothes. Change lanes. Change jobs. Change the sheets. Change flights. Change your tune. Change horses midstream. Change your latitudes and your attitudes!
Change, and the ability to adapt, is to the human condition as air is to the lungs. We change, and in the doing, we thrive!
In fact, we just elected a president who promised, above all else, to "change."
What if, on March 31, you elected to change the way you use the words "retard" and "retarded"?
Hardly seems like the largest of sacrifices. Not when you consider the changes in language that you have, so willingly, already elected to integrate into your vernacular. You no longer use the words nigger, or kike, or faggot, or jap, or kraut, or mick, or wop.
Why would you? Why on earth would you? Those are all words that hurt. Those are all racial and ethnic slurs and epithets that perpetuate negative stigmas. They are painful! And that is not okay. It is wrong to pain people with your language. Especially, when you have already been made aware of your oral transgression' s impact.
Make no mistake about it: WORDS DO HURT! And when you pepper your speak with "retard" and "retarded," you are spreading hurt. So stop it. Stop saying "retard" and "retarded." Those words suck! You are better than that and you definitely do not need to be "that guy."
There is no longer any acceptable occasion to lace your dialogue with the words "retard" and "retarded." Without fail, those words are the stuff of hurt. They, straight up, are. So, stop it! Stop using the "R-word."
The 7 million people with intellectual disabilities (around the planet) who are on the receiving end of this hate speak are genetically designed to love unconditionally. These "retards" are NEVER going to return your vitriol. Ever! So what could possibly be the up-side of continuing to use the "R-word" in your daily discourse?
We love you. We do!
And, just in case you missed it and you need an extra hug? We love you!
You do not need to love us in any kind of reciprocal fashion. You don't. (It's not that kind of bargain.)
But, how about on March 31, you elect to change? A word? Two stinkin' syllables?
On March 31, join us and "Spread the Word to End the Word." And the word is "retard!" It HURTS! So help us to cut it out.
Thank you! We do love you!

John C. McGinley

Learn more about Spread the Word to End the Word

Take the pledge to stop using the R-word

The mission of Special Olympics is to provide year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy and participate in a sharing of gifts, skills and friendship with their families, other Special Olympics athletes and the community. For more information, please visit our Web site: www.specialolympics .org.
Special Olympics | 1133 19th Street, N.W. | Washington, DC 20036 USA | +1 (202) 628-3630
Toll Free +1 (800) 700-8585 | Fax: +1 (202) 824-0200| info@specialolympic s.org | www.specialolympics .org

"Voluntourism"

Max learning about donuts at 7 weeks old! Is that so wrong??

**


After writing about getting involved in the community and being a family that helps others - I ran across the word "Voluntourism"

Have you heard of this?

I was looking around the website "Daily Candy"

and was snooping around the Daily Candy travel newsletter and found an article about this idea of going on adventures all over the world with the intention of helping others.

You can join organizations that take you to greece to help the stray dog population get spayed and medical attention. Um - that's fricken cooooool!

So many more adventures.

I read about an organization called Roadmonkey that was started by a New York Times correspondent.

you can find out more about it by clicking here.

I know there are college students heading down to help victims of Hurricane Katrina instead of taking their Spring Break in Miami - those people are rock stars in my book.

It's so inspiring to see what other people have created to help others and to get other people involved.

I can see Jerry, Max and myself joining something like this in our future.

**

Today was our DSALA mom's luncheon. Jerry came with us - and it was nice to meet about 40 other mom's and kids ranging in age from 7 weeks ( our Max ) up to about 2 years old.

It was a nice introduction to the larger community. We went around the room and introduced ourselves and our babies and a little about our stories. The stories varied a lot depending on whether the mom's had the amnio test done prior to the birth of the child.

The one consistent theme was that we all feel blessed to have the baby we have.

Our friend Kristen was there with her 9 month old Sebastian. I just ADORE that little boy and am so glad I met his mama.
Tomorrow we go to the Club 21 play group - this time without papa. I'm looking forward to going again and meeting more moms and kids.

I am Verrrrrry tired. But Jerry has a harder schedule then I do. He does the hardest 2 feedings of the day. The 10pm and then 2am.
I sleep all night until the morning feeding time at about 5 or 6am. I'm trying to figure out how to give him a break and it might just be that he sleeps all weekend long.

Right now he has Max in the new Sling we bought called the Maya. Love it. And Max fell asleep after 5 seconds in it so we know it works!

xo

You are 7 weeks old today!

©Jerry Seiner Jr. 2009
taken probably when Max was 2-3 weeks old ( sorry - I'm too tired to get a photo from this week prepped to upload )


Max!!

You are so dang CUTE I want to eat you.
This week
lets see.....

You are sucking your thumb - but have no idea you are doing it.
You still LOVE to be in a sling and pass out with the wubba nub in your mouth in about 5 minutes of being put in there.
You are more alert, more interested, and more able to have a little time to yourself.
You are starting to unintentionally hit the worm and lion rattle toys that are hanging in your bouncy chair. I think you like the sound they make but I could be projecting of course! You stare at them and seem to be having a meaningful conversation with them or some sort of meeting. You seem drawn to the worm the most, and the bee - the bee was the first thing you ever looked at in your bassinet so we put it on your bouncy chair.
You don't mind a bath.
You are growing! We think you're HUGE! ( but really you are just about 8 pounds right now )
You still eat every 3 hours - it takes you about 45 minutes to finish 2-3 ounces and you love to pass out on my shoulder when you are done. I love that too. Don't stop that please!
You didn't pee on me all week during any of the diaper changes ( now THAT is news worthy! )
Your Grandma DeeDee visited you for 2 days this week and you got to witness how many Jewish Mother's it takes to put your clothes on, fold your clothes, and adore you with kisses and hugs!

Your papa went back to work this week and that was the big change for all of us.
So we get to play all day together and when your papa gets home around 8pm - the first thing he wants to do is kiss you and hold you and then feed you. He sends you text messages from work and he misses you so much! I send him photos of you all day long. Today papa had a meeting with the tennis channel and I put you in the tennis onsie he painted for you so we could all be team Seiner supporting papa. I took a photo of that and sent it to him before his meeting. ( I have it on my iphone so I can't upload that today - sorry ! )

Tomorrow we are heading to the Skirball Centerto attend a New Mother's luncheon for mama's with babies and kids with Down syndrome. Your papa is going to meet us there and join us. We can't wait to meet more of the community and to get started meeting other babies your age that you will potentially grow up with or at least play with at different events. The event is being put on by DSALA. We've loved this place and hope to continue to learn and grow from all the resources they have available.

I signed up for Team in Training tonight - Going to train to do a half marathon in October. I'm going to WALK it people - don't freak out on me. Training starts May 23rd. I'm SO excited. I just LOVED doing the triathlon with them a few years ago and the team spirit is something I miss. They scream and shout for joy at every workout. GO TEAM GO TEAM! We raise money to help cancer research.

One thing I dreamed of doing with our baby is getting involved with the community and help others. This will be our first event.
Not that Max will be training with me - but he will go to the event and see all of us working together to help a cause.

I'm looking forward to all three of us finding causes we believe in and putting time and effort into helping others.

Of Course - we are going to get very active in the Down Syndrome Community and help on all levels for our Max and others to live their best life ever - and to be involved in other organizations - like an animal shelter - or some other out reach.

um...ok - I'm falling over from being tired now - need...to....pass out now.

love you Max!

Happy World Down Syndrome Day

first bath in a baby bathtub




Max visits with his Grandpa today.







Max made his first friend.....a teddy bear that Pat Hunter gave him before he was born.....





They seem to have a lot to talk about......until....



Max wanted to practice his punching technique on him.....



Luckily the bear doesn't take anything personally.

They still hang out on the changing table from time to time,,,

when Max isn't contemplating the universe on his own



My cat is just a tad curious when all this madness is going to end???



I'm thinking - not any time soon!




***

Today is World Down Syndrome day. We've been getting a quote each day for the last 21 days from a person who has Down Syndrome in our e-mail from the DSALA - Down Syndrome Association of Los Angeles

here are two of my favorite quotes:

"Having Down syndrome means nothing to me, I'm special like everyone else. I do not let people judge me for having Down syndrome. The important thing is how I feel about myself. On the inside, I feel beautiful."
By: Edward Barbanell (31)
(Billy in "The Ringer")


"I can get a lot of money if I sell my extra chromosome on eBay. I don't need it anymore."
By: Graham Sheldon (23 today)

***World Down Syndrome Day (WDSD), is on 21 March. On this day, Down syndrome organizations throughout the world organize and participate in events to raise public awareness of Down syndrome.
The date was selected by Down Syndrome International (DSI) to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome and is used synonymously with Down syndrome. The original idea was proposed by Stylianos E.

Max is 6 weeks old today!

Max's first Massage:




MAX!

You are 6 weeks old today!

we celebrated you - by getting each of us a massage. She came to the house and you went first. She taught us how to do it so we could sooth you and know what the heck might work for you. It was so great to watch you respond to the touch. Don't worry max - she's going to come back 2 more times ( at least ! ) and pamper you some more!!!

We all LOVED getting the pampering and want to make it a ritual. Maybe once a month or twice a month. It was the first time we've had someone come to the house for massage. I loved that we didn't have to pack up Max and all his things to make it happen.

This is the last week that Jerry is home for his paternity leave!

6 weeks at home. What a treat for all of us.
As you can imagine - I'm gearing up for a big melt down once he is gone.
No - Not Max melting down....
ME!

I've been so spoiled in having a husband who helps with changing - feeding - playing - holding - etc.
We share feeding times and alternate between the two of us so that we get more time to catch our breath and regroup.

We decided to hire someone once a week to come over and help watch him with me so that I can take a walk, take a bath, eat, or just call people and have a moment for myself. I think this is going to help a great deal.

I'm already signed up to go to 2 different play groups during the week - and plan to take him on a daily walk after the noon feeding time as well - so there will be more going on in a way.

Part of me freaks out that I won't know what to do if something is wrong with little Max.
part of me feels like it will all be ok.
part of me needs to know that I can handle it.
part of me doesn't want to know.

most of all I will miss my husband. When I think about him being at work it really makes me sad. We've had such a good time together as a team - the three of us.

His boss had a baby and never really came back to the office. I was hoping maybe - Jerry could take one day off a week and be with us - but that might not be a reality for us.

Going to cherish these last few days in the bubble with him and Max.
it's all about pampering this week.
yesterday we all went to the hair salon and had out hair done. Max just slept in the sling. He doesn't have a hair to cut yet.
Today - massage
tomorrow - walking at the rose bowl
Friday - checking out a play group for kids with Down syndrome.
Saturday Grandpa Jerry and Shari come to visit
Sunday - we will see! I might be a mess that day.

Today is the 18th - we are going to take another belly photo. We are going to keep on doing the belly shots on the 18th and see how long it takes me to get to a place where I feel comfortable in my body again.
they say it takes a year. I have about 30 pounds to lose. I know I can do it. I feel up to the challenge.

Max is doing great and we are still waiting for him to really smile at us - and not just smile when he has gas!
It's still so cute to watch him and his expressions and try to figure out what they all mean.

We had a dresser delivered last night and we are so excited to have a place for all the clothing we got from friends and family. I think it will REALLY help us organize his life more! ( and ours! )

happy happy birthday Max.
6 weeks! What an amazing life already!
We love you
adore you
want to kiss you every minute
can't get enough of you.

Max hangs out with his papa

Not much to say here - just total cuteness!

heading out for a walk at the Rose Bowl. Starting to make that a daily ritual after one of the afternoon feedings.
There's an area with a nice trail we like to take him on in his bugaboo bassinet stroller. That thing has all terrain wheels. incredible.

Have a glorious day.

Quote of the day: "Your Life is an Occasion, Rise to it " - from the movie - Mr. Magoriam's Wonder Emporium

Max is 5 weeks old....and a day

Max is 5 weeks old and a day. I'm not as good at keeping up with the photos on here as I was when I was pregnant. Probably because I had literally NOTHING to do but sit around and grow a baby in my belly and eat and watch tv. Now that Max Harrison has arrived I barely have time to remember to sit around!

Here is a little video for ya:




This week he is awake more - and his eyes are more open - he is tracking us with his eyes more - and enjoying listening to all the music that our friends Amy, Sean, Vera Mae and Iris sent to us! He is starting to grow out of the premie clothing - but not really fitting into regular newborn onsies yet. He is gripping things with his hands and drawing whatever it is to his mouth. We are taking him out a little bit - took him on a walk at the Rose bowl in his stroller - which he was asleep for but his parents totally enjoyed. And friends are slowly being allowed over to meet him.

Mama never really was able to produce any breast milk that was in an amount that could satisfy him, so after doing every single thing that the lactation consultant suggested ( pumping every 2 hours, taking fenugreek, eating oatmeal, putting brewer's yeast on my food, drinking mother's milk tea, going to breast feeding support group, putting hot compresses on my breasts, visualizing being filled up with breast milk ) I then learned that people who have polycystic ovaries don't produce much milk. Would have been so great to know this BEFORE I went through all of this. It was pretty stressful, depressing, sad, etc. I didn't know I was going to take it personally - but I sure did. I finally decided that being with Max was more important then stressing out over how he gets fed and I put it all to rest and remembered that Formula isn't the "f" word.
Do you remember that video by Momversation that I posted before I had Max??

This week we met a family that invited us over for lunch so we could meet their 9 month old who has down syndrome. Talk about ADORABLE! I couldn't stop staring at him. I'm so glad we met them and tomorrow we are going to a play group with them and other families and children that have "DS". I signed up for a yahoo group for parents of children with "DS" and already met handfuls of warm, loving and helpful people that I will meet in person soon. I'm feeling more and more excited about all that is going on for people like Max, and learning more every day. Jerry and I are tickled by all the love we are still receiving from friends and family.

Today Max spent the afternoon naked so he could air out after a sponge bath and then we gave him some tummy time to learn how to hold his head up more and gain more strength in his neck and arms and head, and then had a photo session with him and some of those photos have ended up here. We bought him a new rattle and a new pacifier that has a red dog stuft animal attached to it that you can see in one of the photos. The green, round pacifier and red dog on his tummy as he is totally passed out in my arms. I love listening to him breath, and watching his tummy move up and down with each breath. The squeeks are still killing me when he drinks from the bottle and we are still trying to catch this on video but for some reason he seems to be better at it off camera then on!

Max - we are so so so so so so so so so so so so so in LOVE with you - can you tell?

John C McGinley is my hero! So is his son Max!

I just found out that John C. McGinley has a son with Down Syndrome. His Son's name is Max! What a cool name yes?
He was on the Bonnie Hunt show this past week and talked about Down Syndrome and it just rocked my world and thought you
might enjoy watching this too. By the way - that t-shirt he is wearing I will be sporting soon! "Spread the Word to End the Word!"
03/31/09

the journey ahead

This is a video about the Journey involved with raising a child who is diagnosed with Down Syndrome.
I enjoyed watching this and I think you will too.




The Journey Ahead from Christian Appleby on Vimeo.


We are learning so much every day about what this diagnosis means and doesn't mean. It hasn't been easy to talk about with everyone - but we've gotten so much love and support about this and we are so grateful for that. Max is an incredible light that fills up our lives in so many ways. I'm so glad he is in our lives and I can't wait to learn more about him as he grows up and shows us who he is. I sometimes fear that I won't have a clue as to what to do or how to be the best mom for him and his specific needs and I am sure all the moms out there can relate to that one!

We signed up to be a part of the Down Syndrome Associate of Los Angeles and through that organization we were given the name of a married couple who also have a baby with down syndrome. They will be our mentor family. We've talked with them on the phone and plan on meeting with them soon. I'm so excited about that. It's nice to talk with other moms out there but to talk with one who also has a baby with similar needs as yours is so relieving in a way. I plan to sign up for everything possible. We are going to go to a group soon to meet other parents and I think that will be a great way to learn more about early intervention that we will get for Max, and what all is out there. There is a Huge round up in a few weeks that takes place at the skirball center here in LA and Jerry and I plan to go even though it's technically a "mom's luncheon".

For all the people out there that don't know what to say when they meet someone who has a baby with a developmental disability - you can just say " your baby is beautiful, what a blessing! "
pointing out how he looks - or as he grows if things make him look "more down's then last time you saw him" isn't really a fun fact to point out. How about " Look how cute his ears are! " or " What a sweet baby !"
I think the most important thing I'm trying to say here is that a baby ( or any person ) is a human being first, not a diagnosis.
Getting to know him for who he is - is key to all relationships. Pointing out the things that are "different" isn't really helpful in any way. Telling me that you are not going to tell other people about his diagnosis because you don't want them to be upset - is upsetting. I can't quite put my finger on why this bothers me - but it just feels like you are saying that some thing is wrong with him that others are not going to be able to handle. I think that would be better kept to yourself if you feel that way - instead of telling me that.

Ok that is my daily rant.

Right now Max is in his sling that I am wearing on me and he is content as I type. I just love having him near me this way.
I've loved the early morning feeding time with him. I love being up right before and during the sunrise with him. I love the ritual of it. I love sharing feeding times with Jerry so we can take turns and the other person can sleep more! Jerry likes the late night feedings and I like the early morning ones. I just adore watching Max. His facial expressions, the way he moves around, the way he deals with his bottle, and how he communicates. He looks so different every hour! We are amazed every day at how much he is changing right before our eyes. I hope you get to meet him soon! Yes You!

exercise video

Trying out a new video camera....

You are ONE MONTH OLD !!!!

So MANY photos to choose from - we are gonig to start with these and there will be more soon!

Happy Happy One Month Birthday Max Harrison!!!!

You are amazing!

And I am too tired to type much right now - and I have to run and go feed you!!

I want to say so many things to you - and about you - and share with the world how much in love we are with you.

Hopefully just posting these photos and trying to document everything we see and experience about you will be enough to convey all the love that is bursting up out of both of our hearts for you.

I'm so glad you are doing so well. Your heart is in perfect shape, your muscle tone is great, you sleep so well, not fussy, you love being held, and we love holding you. You could sleep more then 5 hours at a stretch if we didn't get you up at night for your feeding time. You seem to be looking at us more and more and we love looking you in the eyes and singing songs to you.

We got a new sling for me to wear you in and I just love it and you seem to love it too! it's a k'tan sling. It gives me support on both shoulders which feels so good. You slept on me today after your last feeding and I could walk around the house - hands free while you are safe and cuddled up against me and you can feel my heart beating and I can feel your body move as you breathe. It's AWESOME!!!

We also got a new swaddling blanket that I think God designed. It's perfect. You love it. Sleep soundly in it, and you can't get yourself out of it which is relieving at 3am.

I feel like I keep posting the same things over and over about you.
Because all I see is perfection!

ok ok ok
Off to feed you, diaper you, hold you, feel your soft skin and love on you as much as possible before passing out from exhaustion.

Haaaaapppy Biiiirrrrrthdayyyyyyyy tooooooooo youuuuuuuuuuuu!!!!

You are my sunshine
my only sunshine
you make me happy when skies are gray
you'll never know dear
how much I love you
please don't take my sunshine away!!!!!!!!!!!!!!

p.s. - to all of you who are reading this - pray to the breast milk gods that the milk comes in soon. Like today!
Max is great with formula and would love some breast milk too.
Don't need advice here - we get plenty of it from our lactation consultant, pediatrician, friends who have kids, etc. Just prayers please and positive thinking and visualizing lots and lots of milk. Over flowing. For Max!