Chills

This website I came across today just gave me the chills as I read his foreward. What an amazing project and an amazing man.

Check it out....I'm Down With You

A Little Girl Named Sofia...

...has stolen our hearts and we are committed to bringing her home.

We're ADOPTING!!!

Please join us on our newest adventure and meet our little girl who will complete our family.

Saving Sofia

Four is the Magic Number

Here is your riddle for the day....

13 is 8 is 5, 5 is 4, 4 is 4 and 4 is the magic number. Why?
Hint: 6 is 3, 3 is 5, 5 is 4, 4 is 4, and 4 is the magic number.
Hint: 26 is 9, 9 is 4, 4 is 4, and 4 is the magic number.

Now what would this have to do with Three's a Charm?

Finding Home Away From Home

Awhile back we went to Disneyland with the kids and I remember posting how shocked and sad I was to report that I did not see one child with DS in all of Disney. I was shocked by that.

Well, I'm happy to report, I saw not one but THREE children with Down syndrome on our recent trip to Playa del Carmen, Mexico. All three were very "normal" and happy families and the kids were absolutely darling. Two of the kiddos were babies Joaquin's age or younger and one boy was about 9 or 10 years old traveling with his American family.

It was such a joy for me. Two out of the three families, I wasn't able to make a connection with as they were either passing by or busy doing their own thing. But one family in particular I was able to not only meet but really connect with.

I had the pleasure of meeting Iliana and her parents and we spent some good quality time together. Mom was Romanian and Dad was from Argentina. Their daughter Iliana was born in Romania but was flown quickly to Italy to have heart surgery when her diagnosis was made because, as Dad put it, there was "no way in hell they were going to have her surgery done in Romania." Iliana is now 15 months old and they have a new baby boy who is almost 3 months old who was born in Veracruz, Mexico where they live now.

We spent a lot of time talking about how amazing it is to have a child with DS and we also did a lot of comparing on the services provided for a child with DS in the States vs a child in Mexico or in Eastern Europe. Dad is an international engineer of sorts and moves every 2-3 years so they are really hoping to move to the States in the near future to take advantage of the services. Mom is a psychologist and also had such great and deep thoughts to share about the joy of raising her daughter. We had so much in common as I think all of us parents do when we have a child with DS. I just loved it. I loved meeting them, playing and visiting with their family and watching Joaquin and Iliana play together.

It was like finding home away from home. And I think we'll have these experiences more often than not for the rest of our lives. I really feel fortunate.

Xcaret

Xcaret is an eco park just outside of Playa del Carmen and it's such a cool place to go with the family...highlights were the bat cave, the floating river, the butterfly preserve, and the turtle preserve. It was our third visit there. We love it!

Here is another family photo on the giant hammock on the beach.

Beach Baby

The sun, surf and sand really agreed with Joaquin. I think it's safe to say he is a Beach Baby!

Then and Now

Here we are in Playa at Christmas time in 2005 and then in 2009...one of these things is not like the other?!?! One of these things just isn't the same...and we are so glad about that!

I'm kinda happy to report that Hector and I don't look too much older, right?!?!

Happy 5th Birthday Mateo!

Turning 5 is a big deal around here. It's always been my favorite number and for some reason age 5 just seems so BIG!!! Mateo turns FIVE today and we will spend the day celebrating him. With two boys over the age of 5 now, it feels like our family is about to head into a different mode. Every year our boys will grow more independent. Makes you want to take a moment and just cherish these years. Thank God I have the ability to be home with my children and savor it all...the hardest job in the world but the BEST job in the world. Thank you Hector for making this possible for our family.


Happy Birthday Mateo. We love you so much!

Changing Perspectives and Expectations

Check out this link and learn about a Spanish actor who has a degree from a University (and is pursing his second) and oh, by the way, he has Down syndrome....

The Need for Inclusive Education

A Leap of Love

Here is an article from The Washington Post about an amazing family who adopted three boys with Down syndrome after the birth of their son, Jonny, who also has DS. Their daughter, Maddy, just happened to audition for this season's American Idol and made it through! She is not only a very grounded, compassionate 16 year old girl but she has a gorgeous voice as well. Please read this article about her wonderful family!

A Leap of Love

Wordless Wednesday (Playa del Carmen)

A Beach in Tulum at Dusk

First Stop...COBA

Coba is the tallest Mayan pyramid in the Yucatan and we all climbed it....well, everyone except for Joaquin. But he made it up about 4 steps!!



This thing was TALL and steep and VERY scary.


It took about 3 miles hiking in the jungle to get to the pyramid and the boys were all troopers.





As soon as we got there, Diego started climbing all by himself. I yelled to Hector to go after him after a German couple looked at me like I was crazy and said "Wow, he's brave." I realized then how DANGEROUS the thing was. So Hector went up after him and Mateo followed right behind.

Now, anyone who knows me also knows that I am NOT a nervous parent. I'm pretty easy going and usually remain calm even when faced with potentially dangerous situations. But this pyramid had me sweating. There I was at the base of the pyramid clinging to Joaquin in his carrier and I was literally praying out loud to God to keep the boys safe as they fearlessly climbed to the top. I was SO nervous.



But...they made it! And they made it down. Hector said it was the scariest thing he's ever done with the boys. Diego was thrilled and Mateo was totally cool with it. Mateo is usually my very cautious little guy but he really tackled the climb with absolutely no fear. Amazing!



When Diego said he wanted to go again, I said I've got to do this. I've got to tackle my fear. I have the BIGGEST fear of heights. As I climbed I didn't look up or down. I just stayed as close as possible to the rocks, keeping my center or gravity as close as possible to the stones (I must have looked ridiculous) and eventually I made it. The view from the top was worth it all...nothing but miles and miles and miles of untouched jungle. Gorgeous! I'm so glad I did it.

A Mexican Holiday

We spent 12 amazing and beautiful days in Playa del Carmen, Mexico. Playa is about 40 minutes south of Cancun on the Caribbean Sea...the clearest aqua blue water that you have ever seen! It was a wonderful vacation for our whole family and we were able to celebrate both Christmas and New Year's there. It was the perfect time to take Joaquin. He is the best traveler in the bunch. He spent his time crawling everywhere, standing up and cruising around different obstacles, playing in the waves and the sand and overall just LOVING the sunshine and the beach.


I plan on sharing different parts of our trip in the next few posts so I can share with you our adventure. And BOY, what an adventure it was!

Our Christmas Tree Angel

This Christmas I decided to get involved in the Christmas Angel Tree Project at Reece's Rainbow and I hope to make it an annual tradition.

I chose to sponsor Sofia. I absolutely fell in love with this little girl who is in an orphanage in the Ukraine. Her birthday is February 21, 2008. She is almost the same exact age as Joaquin. She is beautiful and I have to say that I can't stop thinking about her. I have always wanted a little girl and the name Sofia was going to be Diego's name if he had been a girl. I sent in a donation and received a beautiful porcelain ornament with her picture on it.


If and when our financial situation should change and afford us a bigger home (or at least one with two bathrooms) and just a bit more cushion to help with the additional costs, I would most definitely look into adopting a child from Reece's Rainbow. I am so inspired by my blogging friends who have adopted or are in the process of adopting from Reece's Rainbow. They know the absolute joy and honor it is to raise a child with Down syndrome. I so wish I could bring Sofia home and it pains me to think it isn't possible at this time.

Happy New Year sweet Sofia. I hope your forever family finds you as soon as possible! We send you our love and will always think of you at Christmas time when we put your ornament on our tree.

Precious

A must see movie.

A very intense and difficult movie.

I am at a loss for words on how to describe this movie so I will direct you to a wonderful review on The Feminist Spectator.

And how does this relate to my blog and my journey with Joaquin? Well, I had no idea myself until a scene with "Little Mongo" appeared and took my breath away.

An excerpt from The Feminist Spectator's blog:

Precious’s first baby by her father has Down syndrome and has been banished, by Mary, to live with Mary’s mother. Mary, who can’t stand the sight of her, calls the baby “Mongo,” short for “Mongoloid.” The sweet girl is friendly and affectionate, cheerful and placid. When Mary’s mother, wary and suspicious of her own daughter, brings the little girl to their Harlem apartment in anticipation of a city social worker’s visit, the three-year-old’s non-discriminating, innocent affect throws into even sharper relief the cruelty in which Precious lives.

Innocent, non-discriminating, friendly, affectionate, cheerful, placid. Words l love to hear associated with children with Down syndrome. Words I've found to be so true.

All I can really say is, go see this movie. It will move you.

Litmus Test

I seriously think that Joaquin could be the ultimate litmus test for whether or not a person is truly good or capable of true joy and love.

Case in point...going through the airport with Joaquin in the stroller waving hello and blowing kisses to ABSOLUTELY everyone. And he does this with absolute abandon and at the same time is so genuine about it. Watching people's response to this type of open affection was truly remarkable. I felt like I was the director of some social experiment. People either completely "got it" and were just as open with their affection back to him or people just looked with confusion or disbelief. I really feel bad for the latter.

It was so refreshing to see people give the love back to Joaquin or just to see that their day was made brighter by the smile of a child. Even young children were touched by his enthusiasm. On the other hand, it was so sad to see some people who were so inside themselves or so downtrodden that they were not able to embrace or even acknowledge this sweet boy giving them love.

All I can really say is that it was a joy to be a passenger on Joaquin's love train through the airport.

Christmas Card 2009

To all my blogging friends who are now my extended family, here is our Christmas card this year. Merry Christmas and Happy New Year!

Fashionisto

Here's my baby boy looking like a big boy and rockin' his new baby leggings that we won from Knotty Baby Wear on Down Syndrome New Mama's blog. Thank you again girls!



So darn cute! We've had a LOT of fun with them and Joaquin seems to really like them too. We love putting them on with onesies and Joaquin gets a ton of compliments on them!

Breaking Up

On the day of the Buddy Walk this year, I had the pleasure of walking with a friend of mine Gina and her 36 year old sister Renata who has DS. I had so much fun getting to know Renata better and we became fast friends. We even held hands for some of the walk and it was as natural as can be. She is such a sweet, dear person and is one of my personal heroes as she has overcome many health issues (unrelated to DS) and the fact that she had DS may have been one of the contributing factors to her ability to survive. More on that for another post.

During our walk, Gina asked Renata if she could share the story about her recent breakup with her boyfriend. She went on to tell me that Renata had had a boyfriend (who also had DS) for a couple of years (they worked together) and recently her heart was broken. Her boyfriend had broken up with her. And here is where you have a smile a little bit. Even Gina and Renata can laugh about it now. Her boyfriend broke up with her...not for another woman...but for a man!!!

Renata went on to say that yes her heart was broken but mostly that she was caught off guard by his announcement. She also said "I'm over him!" and said she wishes him well in his new love pursuits.

So...another example that yes, people with DS are more alike than different. Sounds like some good material for a Maury Povich episode to me!

Our Fragile Emissary

Our Fragile Emissary

With modern screening and such
they wonder why
you're here, on this earth
in our home
and in our arms,
after all, anyone
with any sense would have resolved
this problem of you
pre-birth, pre pain.

Blonde Beauty,
tiny as you are,
you catch their stares,
strangers' second glances
into tender baby blues.
And your young
sweet ears hear whisperings
("Down's," "defects")
words dropped loosely
at extra-chromosomed girls.

With such stinging receptions
how we long to shelter you,
surround you; keep your
gentle smiles to ourselves.
Instead, we hold you
up, for others to see;
let you, our fragile emissary
speak to an imperfect world.

Written by Nancy Tupper Ling

Palin on Oprah

Did anyone see it? Sarah Palin on the Oprah show? Thoughts?

Loved seeing Trig. Didn't love Oprah's line of questioning on Sarah's pregnancy with Trig. Didn't love Oprah's choice of words when talking about Trig's Down syndrome.

Politics aside, I would actually love to see more of the Palin family and Trig. They look like a really normal, healthy, happy family. Looks like Trig is getting really close to walking! Trig and Joaquin are really close in age so I will always have a fascination in following that cute little boy.

I just read on Yahoo News that Palin's appearance on Oprah's show received the highest ratings since 2007 when the Osmond's appeared on her show. Pretty interesting!

Chromosome Cake

Just this evening, Hector and I had a great opportunity to attend a Sibling Workshop led by two experts in the field of sibling relationships in families with special needs. Dr. Brian Skotko and Sue Levine led the workshop and I feel so lucky that DSIA flew them out to Sacramento to speak with a small group of us. Diego was able to attend the breakout session for children ages 5-8 and then childcare was provided while Hector and I attended the parent session.

It was so informative and Diego also really enjoyed having his session with some peers experiencing the same thing he is. I think Sue validated the kids feelings no matter what they were and helped them to process having a sibling with DS. The kids expressed their feelings and also shared advice to their parents. It was really eye opening to see the things they said on their brainstorming papers. Things like "Pay attention to us too" and "Let the baby rest sometimes" and "Be fair" and "Have a baby with DS". This last one Sue and Brian mentioned is really interesting. They have collectively been doing this type of thing for 35 years and they said in the last 5 years more and more often kids (and really young ones) are talking about prenatal decisions and choices. So when the kids said "Have a baby with DS", they meant that they feel babies with DS are wonderful and they want them in their lives. Interesting!

One of the best tidbits of the night was a tip on how to explain how or why an extra chromosome can make such a difference in people. Sue mentioned this "recipe" was one way a mom in one of her previous sessions explains it so that even young kids can understand....

Chromosomes are ingredients that make us who we are and it's like the ingredients in a cake. All cakes are made with flour, sugar, eggs, some vanilla and some oil in our cake batter and we bake it in the oven and out comes a yummy, delicious cake. Having an extra chromosome is like adding in an extra egg or maybe a little extra oil. You still get a yummy, delicious cake but this cake might be a little softer, spongier or stickier but it's still a yummy delicious cake.

I thought this was a GREAT way to explain it...not to mention it kicked in my sweet tooth!

Thank you Sue and Dan for an awesome afternoon and thank you DSIA for hosting them.

Words From The Wise

I found this note on a Yahoo Group that I belong to and I thought it would be great to share. Rick Dills is a father of a 36 year old daughter with DS. This is his advice when thinking about your child's educational plan.

Here are his words:

My attitude is to step back and let the combination of your child and the education system work. I don't think that it matters whether a child is in a special program, mainstreamed, or included provided that the teachers really want your child and get significant personal satisfaction from her/his success.

There is much more to life than academics or inclusive (age appropriate) social contacts.

Yes, many of the "poster children" had immense resources spent on them. Most were already among the elite with DS in that they had much more than average capability and have achieved in specific, but important areas. Each of our children is different and each is valuable whether they are "poster children" or perhaps more handicapped from the beginning than Karen Gaffney. WE ARE NOT INTO COMPETITIVE CHILD RAISING !!!!

My observation is that satisfactory adult outcomes do not correlate with how hard you have pushed your child, but rather on how you have taught them to be proud of who they are. Setting the bar too high prepares both parents and the child for failure.

If you have lots of money, you can spend it on your child in elementary school. I would recommend saving for potential post-high school training to help your child (whatever level she/he is at) to live as independent and happy a life as they can. It is just like normal kids. Private schools are OK if you have lots of money, but if that means you don't have enough for college, you have made a big mistake.

Remember that you have a life and is isn't just taking care of your handicapped daughter. My wife and I decided from the beginning not to let this be the end of our personal lives and development. Over the years I had a remarkable career, but I did find extra time for the things Jan needed. My wife went to med school when Jan was 10. The payback for that was that when Jan went through her awful life threatening years, her Mom was there and trained to help. There were times when Jan would have died, had it not been for Mom's intervention in her care.

We raised our child with the expectation that she would go on to her own life as an adult. That is where she is today and that is where most of her peers are. The few who are "poster children/adults" are doing just fine in their 30's, but so are those who simply had ordinary caring parents who didn't have the resources to make their child a public example.

See that your child is happy and developing, even if more slowly than those without Down syndrome. See that they are praised
enough to be proud of themselves. Put your energy into the places where you can provide something that the school and other programs cannot. We included Jan intensively in our lives, hiking, swimming, skiing, and in just doing the same chores her brothers had. I stepped in when programs weren't available such as being her coach in Special Olympics when there wouldn't have been a program if I didn't.

Work WITH the people whose job is to train and support your child in a teamwork fashion and not in a confrontational one. We had a major blow-out in Jan's care in the past week. It will be taken care of because there is no blame, but rather a need for different handling in the future. Mistakes happen, but you don't have to get mad.

Yes, some people won't appreciate your child when they should. Try to fix that or if necessary withdraw your child. I always felt that Jan was a gift to the world. If you didn't want that gift for some reason, you were not entitled to have it. It is the other person's loss and not Jan's.

Rick ... dad to 36 year old Jan who does have Down syndrome and is an
individual, just as your child is!

The Episode of Glee

I have never watched the show before but I got a tip on Facebook to watch it this week.

I would love to hear how the DS community felt about the show. I found it touching at times and "touchy" at times. I'm still processing it.

For those not familiar, Glee is a popular musical sitcom on Wednesday nights on FOX around 9pm. The episode this week included two actresses with DS. One portrayed a cute, bubbly high school student trying out for the "Cheerio's" and the other portrayed an older, nursing home bound sister of one of the main characters on the show.

I would love to hear people's thoughts about the episode. I was surprised that there wasn't much blogging activity on the subject. I think we all might be too busy to watch much TV but if you did get a chance to see it, please share your feelings!

Apparently, the actresses will appear again in upcoming episodes as their story line is not complete yet. I look forward to watching it.

Here's a link to the full episode. You can even watch it online.

"Wheels"

One Lucky Baby

Joaquin is one photographed baby, let me tell you. We had the pleasure of meeting a new friend and mom of a child with DS last weekend, Michelle Slape. She is a photographer in a nearby city and she is considering specializing in special needs children. For DS Awareness Month she offered a free sitting for families with a child with Down syndrome. We took her up on her offer because...well...I just didn't think we had enough photos of Joaquin. Hahahaha!!!

Anyway, I'm glad we did it. One...Michelle is adorable, talented and she is a mom of two sweet boys...one who happens to have DS and the world's most infectious grin. His name is Cody and I can't wait to meet him next time. Two...it's fun to see different photography styles and to help inspire a possible career direction. I hit it off with Michelle the moment I met her and I hope we can get together again with our kids sometime soon.

Here is her latest blog entry. Enjoy! And THANK YOU Michelle for a wonderful morning and some beautiful photos. I can't wait to see the rest of them!

MRS Photography "My Heart Has Been Touched"

Teachable Moment

I was chatting with a new friend at the park today and the subject of Joaquin and DS eventually came up. She said she wasn't sure that Joaquin had DS because he seemed so happy. She said that she thought all kids and babies with DS were usually sad and lacked emotion. This was her vision of DS and she said that Joaquin didn't fit that vision.

I was kinda stumped. I thought the misconception was the opposite but it goes to show you that the misconceptions are all over the map. I responded by saying that typically people assume that kids with DS are always happy and reassured her that Joaquin has all sorts of emotions and that he can be sad at times too. I told her that maybe she was mixing up low muscle tone in the face with being a sad, emotionless face. I'm thinking that maybe her vision of the typical open mouth face with the relaxed tongue is what she was referring to. I tried to explain that children with DS are just like any other child. I think it made sense to her...I hope. I hope it was a learning moment for her.

I hope to never pass judgement on people's misconceptions. I hope always to be kind, informative and open when chatting with people about DS. I want to be an advocate not an adversary.

HAPPY HALLOWEEN 2009

May the FORCE be with you this Halloween!

P.S. We won Hector's Employee Halloween Photo Contest with this picture...a $100 VISA card! Woo Hoo!

Walking for Joaquin 2009

We had a blast at our 2nd Annual Buddy Walk (a.k.a. Step Up For Down Syndrome) on October 25th. We raised a total of $1425.00 (just $75 away from my goal and there is STILL time to donate) and had exactly 60 team members walking with us on the most beautiful Fall day. Our colors this year were yellow and orange and I continued my tradition of tie dying t-shirts for all the kids "Walking for Joaquin". Joaquin's Aunt Jennifer made the most beautiful and amazing J-O-A-Q-U-I-N banner that was hand sewn and appliqued with love. Team "Walking for Joaquin" was shining bright that day!

Here are just a few photos from the day...more to follow soon!