Friday, September 25, 2009

Feature in The Sacramento Bee News Blog

This Saturday Joaquin will be featured in a special video presentation on a jumbo screen in the heart of Times Square in New York City. Every year, NDSS reminds the world in a big way about the gifts that people with Down syndrome bring to their communities, the 40-minute showing takes place each year on the morning of the New York City Buddy Walk® and is one of the highlights of National Down Syndrome Awareness Month.

NDSS receives thousands of photo submissions for the Times Square Video Contest. Because the Buddy Walk® promotes acceptance and inclusion of individuals with Down syndrome, the winning photographs feature children, teens and adults with Down syndrome working, playing and learning with friends and family.

Here is an article by Niesha Lofing, family and food writer for the the Sacramento Bee, about Joaquin. Click on the link below to read it. We were so thrilled to read this and it brought tears to our eyes, check it out! Local toddler featured in national Down Syndrome awareness campaign

Tuesday, September 22, 2009

Baby Einstein

Thanks Uncle Zach for discovering this uncanny resemblance!

The Boy That Never Was

When I look at my son's face, I cannot imagine a more perfect little boy. He is exactly as he should be.

It wasn't that long ago though that I mourned the boy that never was. I was inspired to write this after reading Adrienne's blog post at Our Unexpected Journey. She gave me the courage to write about my early thoughts after receiving Joaquin's diagnosis when he was three months old.

When I was pregnant with Joaquin, I fantasized about having my third boy and I was quite proud and excited to add yet another handsome, smart boy to the family. When we first came up with Joaquin's name, I googled it to see if there were any other Joaquin Sanchez's in the world and I was surprised to find a gorgeous and talented soccer player in South America. I immediately had images of my third son following in these footsteps- possibly becoming a famous athlete some day. I fantasized about the three of our boys taking care of us as we grew older, watching over and protecting their mom. I had the whole image in my head. That perfect little family picture.

Would he be the one to follow in his grandfather and great grandfather's footsteps and become a doctor? Would he be the smartest of my three boys? Would he be an amazing athlete? Would he be even more good looking than my other two boys? I'm embarrassed and ashamed to even admit this stuff. It sounds so superficial now and it was.

Then, shortly after receiving the diagnosis of DS, I thought to myself....well, maybe Joaquin will be a superstar with DS. He will overcome all his obstacles, meet his milestones faster than most, and he would be different than others with DS. Again, I'm embarrassed and ashamed to admit this. It was almost as if we could wash away the DS part of him. I even flirted with the idea of testing him for mosaic DS because maybe somehow this was better than true Trisomy 21. What on earth was I thinking? I was still caught up in that perfect family image.

I would also stare at his face those first few days after the diagnosis and think, he's so beautiful but would he have been even more beautiful if he didn't have DS? I fought with my own thoughts about accepting and loving the face I was looking at but at the same time trying to imagine him without the extra chromosome and the tell tale facial characteristics. I found myself focusing on the photos without his tongue sticking out or without the crossed eyes. The ones where the DS was not noticeable. Maybe it would magically disappear. I'm certainly not proud to admit this.

Thank God I was given the opportunity to see what really is most important. Although I mourned the possibility of what I thought was a perfect child, my eyes have been opened to the fact that Joaquin and his "flawed" genetic makeup is more than perfect. He is beautiful. Inside and out. His true beauty comes from within and shines bright in his presence. He has already taught us more than we will ever be able to teach him. He may never be a doctor or a famous athlete but he will change the world. He already has. Our eyes are open to the richness and beauty in life that is unexpected. It's like my buddy Forrest Gump said so eloquently, "Life is like a box of chocolates, you never know what you are going to get." And when it comes to chocolate, I have yet to meet a piece I didn't like!

Now I want to share Joaquin with the world. THIS is the face of Down syndrome. THIS is what so many people fear. THIS is what some "caring" professionals want to eliminate with earlier prenatal testing. I want the world to see and know what I know now. THIS is the son I never knew I wanted or needed in my life. The boy that never was IS the boy that was supposed to be. Thank you God for blessing me with Joaquin. I am forever grateful.

Sunday, September 20, 2009

First Night Away

Joaquin is 19 months old and on Friday, Hector and I had our first night away since he was born.

He did fine and he was in excellent hands with my mom and dad and his two brothers to keep him company. He woke up once at 11pm at night and clear as day said "Mom." My mom said he sounded just like his brothers and it startled her to hear him speak so clearly and adamantly. She had to convince him to drink some rice milk and eventually settled him back to sleep.

I'm still nursing him so we weren't gone for more than 24 hours. We left the boys at 2pm and we were back the next day by 9:30am. It was great to get away for the night. We went to a local bed and breakfast and we had dinner out, enjoyed a good book (Gifts 2!!!) and a movie in our room. We finished the night with a jacuzzi soak and couple's massage and facial. It was just what we needed.

We had a nice breakfast in bed the next morning but then I was eager to get home. How could anyone stay away too long from this...

By the way, Happy Birthday Papa!!!

Friday, September 11, 2009

The Teachings of Jon

Have you ever seen this documentary?

I've known about it for quite some time but it took me until just the other day to find the courage to watch it.

I purchased it on the recommendation of a friend of mine that mentioned it was one of the most touching things she had ever seen and she does NOT have a family member with DS. Then, I read in Kathryn Soper's memoir that she too had seen the documentary and was touched deeply by it as well. I knew it was time.

I would love to hear what people think of the show. I found it very moving and extremely interesting but at the same time I was left with many questions and a bit of sadness. Jon and his family are very happy so I should be happy for them but I'm just left wondering.

I would say that this film is a HUGE reminder of how important early intervention is for children with DS, those first 3 years of life are crucial, and Jon was in an institution for the first 7 years of his life, in a crib for most of that. We will never know how EI could have possibly changed Jon's life and maybe that's not important but it does leave you wondering.

I think of all the tools available now to help people communicate and since Jon is non verbal, I wonder if these things could help now. I remember seeing a communication board where you can place picture of things you want to say (different foods, different activities) and you push them on this board and they speak for you. I wonder if they have tried this with Jon.

Lots of unanswered questions but I guess the most important thing I gathered from this documentary is that if this is the worst case scenario in terms of level of function, there will still be joy. Jon is happy. Jon's family is happy. That IS the most important thing.

If anyone here in Sacramento or even elsewhere would like to borrow my DVD, I would be happy to lend it out. Just email me and I'll send it off to you, a little lending library if you will.

Tuesday, September 8, 2009

Trouble with a Capital "J"

You might find this hard to believe but I have never EVER had to put child safety locks on any of my cabinets or drawers. Not even my china cabinet. Please remember...Joaquin is our THIRD boy. We have made it this far without having to really change or alter our household in any way. Crazy, right?

That was until our third little devil discovered a whole new WORLD to explore inside our house.

Over the past weekend, we discovered that we have a little troublemaker in our house. Our little crawler or shall I say creeper (he's on hands and knees almost exclusively now for transportation) and our little stander and cruiser has figured out that he can get into anything and everything.

The other day I found him playing in the toilet water (YUCK!!) with the garbage can tipped over right next to him with used tissues thrown all over the place. He also LOVES to throw anything that happens to be on the bathroom floor into the tub. I've found shoes, underwear, toys all stashed in the bathtub.

Later that same day, while Hector was reading stories to Diego and Mateo at bedtime, Joaquin decided to climb up one of the boy's lounge chairs and up onto the top of the train table. Diego and Mateo NEVER did that kind of stuff!

He also LOVES to unload baskets. And we happen to have a lot of baskets that we use as storage containers. So...all the clothes, toys, blocks, etc are taken out of the baskets on a daily basis and in almost every room of the house. I do remember Diego and Mateo taking down the books everyday from the bookshelf but never to this extent. Joaquin is thrilled by laundry piles.

And don't for one minute leave the front door open! This boy will dart over to the open door and creep his way onto our porch. He's smart enough to know to stop at the three steps that lead down to the driveway. Thank goodness! Otherwise, I'm sure he'd be next door if he could.

I can't take my eyes off him when we are outside. He's put sticks, leaves, grass, pebbles, rocks and shoes in his mouth. He does this all with a grin on his face! He knows he's playing us!

TROUBLE I tell you! I have a feeling we are in for it with this one. I know I'll be buying safety locks in no time and rearranging the house. I've said it before and I'll say it again...the third one's a charm!

Thursday, September 3, 2009


I have officially SOLD OUT of my first batch of 19 "i did it" tees!

I have officially ordered 19 "Gifts 2" books from Woodbine House!

I have officially ordered 20 more infant tees and am saving up to order some toddler tees next!

I have almost officially SOLD OUT of this second batch of tees and will again be purchasing more books!


We CAN make a difference!!!

Wednesday, September 2, 2009

Got Milk?

This is the face I see whenever Joaquin wants "mama's milk" and he pulls up to my lap to ask. Notice the sharp pointy teeth? One word...OUCH!!!

I'd really like to make it until he turns two but that all depends on whether or not he decides to bite me. It's happened only a few times so far and I've escaped permanent damage but I'm still REALLY nervous about it!

Tuesday, September 1, 2009

The Magical Afghan

I swear this afghan has some sort of "happy" magic in it! It just brings out so much joy in all the kids. We were so blessed to be able to share in it's journey around the world and we also feel blessed to be a part of this very special T21 global community.

Here is a series of photos of Joaquin playing with the T21 Traveling Afghan. He was so theatrical with it.

And then it was time to pass it on to Joey. Joaquin tucked the blanket around Joey very carefully and then looked at me as if to say "Does it really have to go?"

Apparently the afghan also has some magical sleep powers...Joey fell fast asleep as soon as we put it over him.