Wordless Wednesday

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!

Mom.me: Local toddler featured in national Down Syndrome awareness campaign

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.

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!!!

Wordless Wednesday

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.

Wordless Wednesday

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!

SOLD OUT!!!

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!

THANK YOU FOR ALL YOUR SUPPORT!

We CAN make a difference!!!

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!

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.

Guess What We Got?

The OFFICIAL T21 Traveling Afghan!!!




John Michael dropped it off yesterday and we are thrilled to have a few days to enjoy this amazing little blanket. So special!

Read more about this afghan and sign up if you haven't already. We will be passing it on to Baby Joey and then Miss Gabby. Thank goodness for the mid-August chill we've been getting here in Sacramento. Makes us all want to get cozy with the blanket!

Wordless Wednesday

Joaquin's favorite part of Speech Therapy at Jabbergym.

Do I Have Down Syndrome?

A few months ago, my oldest son Diego asked me a question that made me think long and hard about how much siblings can be affected by having a family member with special needs.

He asked me out of the blue..."Do I have Down syndrome?"

Me: "No you don't have Down syndrome, why do you ask?"

Diego: "I want to have Down syndrome!"

Me: "Why?"

Diego: "Because....(said with a sad tone in his voice)....I want to be special too."

Me: "Diego, you ARE special! You don't have to have Down syndrome to be special. We love you just the way you are. We love all of you. You are ALL special to me and Papa."

Wow.

Since that conversation, I've made an extra attempt to explain what DS is to Diego and to remind him that he is just as special as his brother Joaquin is and just as special as Mateo too. It's been an opportunity for me to be sure and check in with him. Now I understand how deeply this has touched him. It's true. Joaquin gets A LOT of special attention. Lots of different therapists come in and out of the house every week. Most are very welcoming to Diego but there is one therapist that prefers that the boys stay completely out of the room during Joaquin's session and that is really hard on the boys and on me. Joaquin is also a people magnet so he gets a lot of attention from family, friends, even strangers and this must be hard on the boys too.

Another interesting thing that has been happening lately, Diego will let his tongue rest on his lower lip almost as if he wants to look like Joaquin. He doesn't do it disrespectfully. It's a subtle thing he does when we aren't looking. It's like he is experimenting with it. I know that this is an attempt to get our attention as well.

The one thing that we have going for us is that Diego absolutely ADORES his brother Joaquin which is so beautiful to witness. I wish he felt the same way about his brother Mateo sometimes! But I can see that if I don't continue to watch the family dynamic that some resentment could grow and that's the last thing I want to have happen. I take extra care in making sure each of the boys gets lots of attention and special activities specific to them but it's hard sometimes because Joaquin is also the "baby" in the family so naturally he's going to get more attention just based on his birth order. Thankfully I'm a first born in my family so I know how Diego feels at times, but having a child with special needs in the family is very new to all of us. I would love to attend some workshops on this topic in the near future or chat with families who have been through this to make sure I do the best job I can in raising my boys to love one another and to each feel individually special. All of this without any resentment towards their youngest brother.

Just another reminder to tell our children, every day, with Down syndrome or not, that they are loved and they are SPECIAL.

i did it

"Just Do It"

Nike's hugely successful ad campaign has been telling us for quite some time now to just do "it".

It's about time the DS community came back with our own slogan. Our own ad campaign.

On our recent trip to Seattle, Joaquin was just learning to pull himself up to stand and he was SO proud of himself. All of us were hanging out and watching him try out his new skill when all of a sudden he starting laughing, cracking himself up and clear as day shouted "i did it"! (Hector added some appropriate music to the video clip of Joaquin's new words and he added a bit of crawling footage from earlier today for fun!)



I didn't believe it. I thought I was hearing things but then he said it again. And again. And again. Until we were all cracking up with him, half in disbelief and half in awe. Here he was, accomplishing another milestone and telling us how proud he was. "i did it".

He did "it".

And so did Avery.

And so did Bridget.

And so did Finn.

Nate did "it" too!

And there are hundreds more doing "it" every day.

Three simple words that mean so much. Accomplishments that are celebrated and cherished. All the simple little things and the big things too. First smiles, first steps, first words. Things we used to take for granted and never will again.

I took this small little phrase that means something so big and made a limited quantity of infant and toddler tees with the slogan on it.



My hope is to sell these tees for $21 each (in honor of Trisomy 21) and for every tee purchased I will buy a copy of the new book "Gifts 2", sign it with the name and/or blog of the child who the tee was purchased for on the inside cover (optional) and donate it to a local hospital, genetic counselor's office or pediatrician's office here in Sacramento. If I sell out quickly and there is a lot of interest, I will have more tees made and expand the effort. I have wanted to give back in some small way and I thought this might be a fun way to do it. We need to spread the word that our children are amazing! They can do "it". Maybe this really could be our new slogan. Our new ad campaign.

If you are interested in purchasing a tee, I have them in 3 different sizes (6/12 mo, 12/18 mo and 18/24 mo). Shipping is on me! You can order a tee by using the comments section here on this post just leave your email address and t shirt size and we'll work out the details. Or you can also order on my online business site Addy & Sam as soon as we get it up on the site.

Let's do "it".

No Pity Parties

Just the other day I met a new friend at a park with our babies and she asked me with frown on her face and a sad tone "Will he ever walk or run?" I told her OF COURSE! And he will probably play soccer, play t-ball or be on the swim team. Of course!

Sometimes people (myself included at times) want to focus on all the things Joaquin is not doing right now. Some people still feel pity for Joaquin. I think this is the hardest part of having a child with DS, when people feel pity or sorrow for Joaquin. So, I thought it was time to switch the focus a little bit. It's time to stop thinking about all the things he isn't doing or can't do right now.

Things Joaquin IS doing and CAN do right now...

move anywhere he wants to go and FAST
put himself in and out of the sitting position
crawl on hands and knees
pull to stand
play peek a boo
say mama, papa, nana, all done, bye ("buhh"), dog ("duhh"), grandpa ("gahpah"), ball ("bahh"), agua
eat at the kitchen table with the family
drink from a straw cup
wave bye bye and hello
sign "more" and "all done"
play ball
play on the drums, piano and maracas
smile, socialize, make eye contact and FLIRT!
get shy
gnaw on his teething biscuits
escape out the front door
get into cupboards he's not supposed to
put things in and out of containers
purposely put his feet in his mouth and grin when you say jokingly "Don't eat your toes!!"
rip his brother's favorite books
throw a small fit when you say NO
pull his lower lip up and frown when his brother takes something away from him
give kisses on command (watch the tongue!!)
push his brother away when he's had enough
laugh and giggle when you tickle him
splash and play with water
have 1/2 hour conversations with us in the morning
beg to get into the shower or bath whenever someone is in it
wrestle with his brothers
follow the dog
sleep through the night
cry when he is sad
screech with joy when he is happy

I'd say he is doing just fine...thriving actually!

HOT Stuff

Sacramento is HOT in the summer!

It was 104 degrees today. We've been spending a lot of time in the pool or at spray parks.

This is how Joaquin is looking these days. It's either this outfit or a diaper. Too hot for anything else!

Homemade Teething Biscuits

Vegan (Wheat Free) Teething Biscuits

Ingredients:
1 cup fruit juice
1 cup flour (any type)
1 cup rice baby cereal
3 TB oil (any type)

Directions:
Put all ingredients into a mixing bowl and stir together until well combined. Roll out on a floured board and cut into shapes. Bake for approximately 20-30 minutes at 350 F (175 C). These biscuits can be frozen for storage and your baby might even enjoy sucking on a partially defrosted one. The cooling on the gums will feel wonderful.

I plan on making these this weekend! I'm so excited. I've been searching and searching for a teething biscuit or cookie that meets the dietary needs of Joaquin. I've been to our local co-op, Whole Foods, our regular grocery store and I haven't been able to find anything that fits. This recipe is perfect. I plan on using a gluten free flour, not sure which one yet. I'll let you know how they turn out and whether or not the little man likes it. He's got four molars coming in at the same time. It's time to find something other than his fingers to chew on!

On Safari

We went on a safari the weekend of the 4th of July in Santa Rosa called Safari West. We rode on a jeep in an open wildlife preserve and got to see the animals up close and personal.


The boys loved it. Especially when one giraffe decided to come and check us out when we were on top of the jeep. He was literally a foot away from Diego's face. It was so cool!


By the end of the 3 hour tour, Joaquin was getting sleepy but once again proved to be an awesome travel companion. He was awake for the whole event and never once complained. It was a great family trip. Next time, we'll have to go and stay the night. How cool would that be?

Wordless Wednesday (4th of July 2009)

Nori

Joaquin continues to eat more and more variety and textures of foods. His absolute FAVORITE snack is nori. Yes.....indeed. He loves dried seaweed.

We break it up into little pieces and he readily opens his mouth and let's it quickly dissolve. It's a great way to get a "green" vegetable in him. As a matter of fact, it's Diego and Mateo's snack of choice as well.

Another fun snack we've discovered is fruit leather. All natural, organic, 100% dried fruit strips that I break into small pieces and Joaquin gobbles it up. He still continues to eat brown rice puffs as well so now we have a nice variety of easy to travel with snacks that don't spoil or require any special handling. These snacks and his straw sippy cup full of water are all we need and we are ready to go!

Joaquin is still officially vegan and I'm still breastfeeding a couple times a day. He has never had dairy, soy, meat, wheat, banana, nightshades, citrus or corn. He eats a variety of fruit (apples, berries, mangos, peaches, pears, plums) and vegetables (peas, spinach, squash, sweet potato, pumpkin, carrots, turnips, broccoli, beets) and he eats flax meal, brown rice, teff, coconut/olive/grapeseed oils, lentils, beans (kidney, black, pinto) and oats. He is thriving, healthy, has tons of energy and has a really gorgeous glow to his skin!

The only supplements we use currently are B-12 once a week, occasionally some probiotics and when I feel like it a multivitamin.

I highly recommend trying the seaweed. It might become your little one's favorite new snack!

Gifts 2

It's here! And ready for pre-sale at Woodbine House and Amazon.

I cannot wait to get my hands on this. I cannot wait to read it cover to cover. We are contributing authors in the book so we are especially excited to see it in print.

Gifts, the first book, was a life saving book for me in the early days of receiving Joaquin's diagnosis. I truly believe that reading Gifts helped move me quickly out of the grieving process and into complete joy and anticipation. We honestly feel that Joaquin is a GIFT and the book certainly was a gift as well.

To be able to give back to other families now in Gifts 2 is an honor. We are so proud of Kathryn Soper's work in collecting the stories and publishing these amazing books...these amazing GIFTS.

Don't you just love the cover photo?

What Do You Think?

I just want to get this one off my chest because it's come up quite a bit for me and it's my own personal battle or struggle, if you will. I wonder what other people think about this.

Here is the scenario. We parents all love to talk about the future of our children with our friends and their kids. Often we parents love to talk, joke, or imagine our son/daughter either dating, marrying, or going to the prom with our friend's son/daughter. This is very typical, fun and harmless talk.

Now here's my dilemma. When it comes to Joaquin, I find myself holding back from making these types of comments for fear of alarming the other parent in some way. Would it freak my friends out? Now, Joaquin is already betrothed to many adorable sweethearts in the "little something extra" club (wink, wink!!) but I have never made a comment to a friend if their child happens to be "typical." I know Joaquin is loved and accepted by my friends but for some reason I'm afraid to even approach this particular subject. In fact, I steer clear of this kind of talk when it comes to Joaquin. If it's Diego or Mateo, it's a totally different story.

Is this wrong? Is this being too cautious? Is this a silly thing to be thinking about? Am I being prejudiced? Am I limiting my child in some way? I don't know. If we are all about acceptance, then I shouldn't be worried about making these very innocent and fun comments about Joaquin with whoever pops into my head. Is it realistic to think that he will date or marry someone "typical"? I don't know...probably not. Is it possible he will go to a prom with someone "typical"? Probably. I think about the movie Mr. Blue Sky where a "typical" young man falls in love and marries a young woman with Down syndrome. I thought the movie was charming but unrealistic. I love the idea of it but somehow I just don't see it happening. Has it happened before? Am I way off base?

I wonder...

Anyone else feel like this sometimes?

Wordless Wednesday

Joey

Joey (a.k.a. Jo Jo) is getting big! Here is an adorable photo my friend Jennifer Ferrara took a few days ago at the park. We love taking care of Joey during the week and it's so much fun watching him grow and develop. He is SO strong and determined and he is such a sweet baby boy.

Mateo...An Old Soul

I heard the sweetest words from our little four year old Mateo the other day. It was one of THOSE days. A day when lots of thing went wrong. Stroller smashed into my car (no babies in it...thank goodness!), purse rolled off the top of the stroller into a filthy, murky, wet ditch (as a result of the stroller smashing into my car), stroller gets quickly relocated only to roll through some old...yikes!!!...vomit (or so it looked like). BLECH!!!! I'm quietly dealing with all of this while trying to unload Mateo, Joaquin and Joey out of the minivan in order to get to a Speech Therapy appointment on time in Midtown. I usually have it down to a science but this particular day was a circus act.

Then, in the quietest of voices and from behind me, Mateo is standing on the sidewalk apparently watching all of this unfold and understanding my desperation he says to me....

"Mom, I wish I was a grown up, so I could help you."

My heart immediately melted into a puddle on the cement. My sweet, soulful, gentle Teo. I immediately hugged him and told him how those words were the kindest words I had ever heard him say.

I love you Mateo, my sweet old soul.

Our Other Backyard

Thank goodness for the park down the street from our house. It's like our other backyard these days. Here is Joaquin playing with Mateo in the "tube" at East Lawn Park. Gotta love those smiles!

Rock-n-Roll

Last Saturday, I completed the Inaugural Rock N Roll Marathon in Seattle! It originally was planned to be a family vacation but in the interest of saving money we decided that I would take Joaquin (since I'm still nursing him) and go with my girlfriends.

We drove the minivan straight through from Sacramento to Seattle in a record 13 hours through the night. Joaquin was a champion passenger as were my friend Mary Ellen's two girls, Malia and Annalise. Mary Ellen, Michelle (my good friend and running partner) and I took turns driving and stopped 2 or 3 times for gas and snacks and the kids slept right through it all.

We stayed at Mary Ellen's sister's house in North Seattle and were welcomed warmly by the family which included little Kaylin and Anika. Joaquin was surrounded by the girls all weekend.



The day before the race, Michelle and I toured Seattle. It is one of my favorite cities and it was a gorgeous sunny day. We went to Pike Place Market and the "Original" Starbuck's coffee house. Joaquin was thrilled with the sights and sounds of the busy city.






Race day was perfect as well. I felt prepared and ready for the run. Within the first 7 miles of the course, I saw two bald eagles on Lake Washington Boulevard. Amazing! At mile 20, Mary Ellen and Joaquin were waiting for me but I never saw them or heard them...I must have really been in the "zone". I feel terrible that I didn't see their smiling faces and I know it wasn't easy for them to get there either. Joaquin spent the rest of the day with Mary Ellen and her sister Suzie at the Seattle Children's Museum as I raced my way to Qwest Stadium for the finish of the 26.2 mile run. It was a perfect day and a perfect run for me.

The following day we packed up the minivan and headed home to Sacramento. It took us much longer going home after a stop in Portland for lunch and Ashland for dinner. But once again, our kids proved to be much better passengers then us adults and were absolute angels the whole way home.

It was a wonderful weekend filled with good friends, good food and great accomplishments!