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!

Name Tag

How did we come up with the names for our three boys?

First of all, I was fortunate enough to marry someone from Mexico and with a last name of Sanchez, we had the WHOLE world of Spanish/Latin names open to us. These names just happen to be my most FAVORITE!

Diego Zacarias....Hector and I both loved the name Diego. It came rather quickly for us. If you ask Hector he will tell you we named him after Diego Maradona (a famous soccer player in Argentina). I was always fond of Diego Rivera's art work (a famous Mexican muralist). But there was something about the name Diego that was so handsome, strong, and fresh. Mind you...this was before the "Go Diego Go" cartoon! So it was very quick that we agreed on the name. Diego is the Spanish name for James and you may also know it from San Diego (St. James). The middle name was a struggle but at the FINAL moment...like when we had to fill out the paperwork at the hospital for his Social Security card...we decided to go with Zacarias which is the name of Hector's maternal grandfather that he never knew. (By the way, Diego would have been Sofia Isabella if he was a girl!)

Mateo Emilio...Again, Hector and I loved this name. Another one of our all time favorites. We loved the sound of the name and beauty of it as well. The nickname for Mateo is "Teo". Mateo is the Spanish name for Matthew. Mateo was actually born in San Mateo County, how cool is that? San Mateo or St. Matthew. We also loved the name Mateo alongside Diego. They just sounded so good together. For the middle name, we decided to stick with the theme of it being a family name so we chose Emilio which is the name of my paternal grandfather who I never knew. (By the way, Mateo would have been Olivia Andrea if he was a girl!)

Then came Joaquin Andres... Hector and I went back and forth on the first name. I loved the name Joaquin and Hector loved the name Lorenzo. For the first time, we really couldn't come to a quick agreement. So we battled it out and in the end I chose the first name and Hector chose the second name. And yes, there is also a San Joaquin Valley here in California so you could say we have very California names for our boys! Then, so many cool things happened surrounding our little Joaquin Andres. You'll have to read one of my earlier posts about the meaning behind "Joaquin". You'll have to read Gifts 2 or go back to the early days of my blog and find my post titled Andres to hear the story of how we chose the middle name. It will give you chills. (We never really came up with a girl's name for Joaquin because we knew early on that he was going to be boy but I remember being very fond of Luciana and Hector loved Mia.)

Thank you Cheri for "tagging" me on this fun name game challenge! I love hearing stories about names. Isn't it one of the first of many big and important decisions you make for your child? So fun!

I tag...
Monica at Monkey Musings
Lisa at Bridget's Light
Elena at The Baby Who Chose Us

The Varanini Family

Here is my side of the family. We took this photo over the summer at a good friend's wedding. I am the oldest of four and there is a 12 year span between my sister and I with my two brothers in between. It's just missing the kids. My brother and his wife Jennifer have 2 precious girls...Jillian and Jolie which added to our trio of boys makes a total of 5 nieces and nephews! Here is a shot of just the siblings: Zach, Myself, Sarah and Josh.


Here is a snapshot of the "manly men" looking very proud, proper and handsome in their suits.


Here is a snapshot of the "girly girls" looking pretty darn cute and sassy.



My parents will be celebrating their 40th wedding anniversary in January. It's so cool that Hector and I both have parents who have stayed together through the good times and the bad, for richer for poorer, in joy as well as in sorrow, and in sickness and in health.

What amazing role models we have!

La Familia Sanchez

Here is a photo of Hector's side of the family when we went to visit them in Mexico a couple months after Joaquin was born. This was Hector's parent's 50th Wedding Anniversary! It was at this amazing reunion that we announced Joaquin's diagnosis and where I was inspired to write the entry for Gifts 2. You can read about what happened in Mexico by picking up a copy of the book. Our chapter is titled "Joaquin & Andres."

Hector's family is really lovely. He is the youngest of 7 children so when we all get together it's a pretty big party! This photo is of his immediate family only (only one nephew is missing from the photo). Everone is married and has at least one child. I think we have a total of 16 nieces and nephews and 14 of those are BOYS!! We look forward to seeing some of his family this Christmas and New Year's when we go to Playa del Carmen. It's going to be so much fun!

Proof

Remember a few weeks back I wrote a post about Mr. Troublemaker?

Well, here is just one piece of evidence.

Yes, he got himself inside the train table drawer.

Yes, he emptied almost every train that was inside of it.

Yes, he then proceeded to get on top of the train table to throw the rest of the trains on the floor.


Proof that we have a very mischievous one in our household!

Super Porridge

I got this recipe from a fabulous mom who makes the most gourmet (and nutritious!) baby food for her little one.

Super Porridge

1/3 cup dry grain and 2 Tbl. dry legume. For the grains, you can use oatmeal (steel cut or regular, not quick cook), brown rice or bulgar wheat. For the legumes, you can use garbanzo beans or kidney beans or even lentils.

Here's the recipe (really simple!):
Grind the 1/3 c. grains and 2 T. legumes together for two minutes using a blender, Vita Mix, Cuisinart or "Bullet". The key is to grind it for 2 whole minutes. It becomes a powder. Bring 2 cups water to a boil and add the ground powder. Whisk to combine. Reduce the heat to low and cook for 10 minutes and it's done. This recipe should give you 5 or 6 servings. You can cool it down in the fridge, then cut it in to serving sizes and then freeze them....kind of like food cubes without the ice trays. When you are ready to serve, just defrost a serving and, at the same time blend some fruit of your choice and then just mix it together with a fork.

Delicious and SOOOOO good for baby!

Choices

It's that time of year again where big choices have to be made.

What to BE for Halloween?

A Giraffe?


A Pumpkin?


A Bumblebee?


Or something else entirely?

Something perhaps from another universe?

Stay tuned! (Just think old, wise and GREEN!)

Parenting.com

Look who's in the Parenting.com "A Special Joy: Kids with Down Syndrome" Album #4...

Joaquin, 19 months

Be sure and enter your special little one too! We did it last year and I love that they do this every year in October in honor of Down Syndrome Awareness Month. So neat to see all the gorgeous kids from all over the country. Even more fun when you find one or two that you "know" from blogging!

More Alike Than Different

I love this new campaign. Please take two minutes to watch it, I think you'll get a kick out of it!

October is Down Syndrome Awareness Month

To All Our Blog Readers:

Please let us know if you have ANY questions in regards to Joaquin, Down syndrome, the Institutes program we are on, or anything related to our journey. We would be HAPPY to answer questions and help increase awareness and understanding of DS.

Thanks!
The Sanchez Family

Wordless Wednesday (Joaquin's Brothers)

Thank God for big brothers!

What joy they give Joaquin. He looks for them first thing in the morning and there is definitely a void when they are both off to school. It's a sweet reunion for all three when they are reunited.

We love our three boys!

Baby Eczema?

I'm wondering if Joaquin has a case of baby eczema.

He got a little rash on his chin a couple weeks ago and I had our pediatrician look at it and she said it was from his drooling.

Then, I tried a new fruit...pineapple and at the same time started using wipes to wipe of his face after his meals and the rash spread to above his lip and on the sides of his cheek.

So...thinking it was a food or contact allergy,I have been feeding him mostly apples, rice and sweet potatoes for a couple days to see if it would clear. Unfortunately it is still the same, if not worse. He wakes up and it's mostly clear but within a couple hours of being awake, it gets quite inflamed, red and is looking dry and cracked by the end of the day.

My baby boy's beautiful skin is no longer. Any advice? None of my kids have ever had eczema and I know how brutal it can be so I'm really worried.

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.