Thursday, December 10, 2009

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.

Wednesday, December 9, 2009

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.

Monday, December 7, 2009

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!

Sunday, November 29, 2009

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!

Monday, November 23, 2009

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!

Sunday, November 22, 2009

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

Friday, November 20, 2009

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!

Monday, November 16, 2009

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.

Sunday, November 15, 2009

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!

Friday, November 13, 2009

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"

Thursday, November 12, 2009

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"

Wednesday, November 11, 2009

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.

Sunday, November 1, 2009

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!

Tuesday, October 27, 2009

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!






Thursday, October 22, 2009

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

Wednesday, October 21, 2009

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!

Sunday, October 18, 2009

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!

Saturday, October 17, 2009

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!

Thursday, October 15, 2009

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!)

Wednesday, October 14, 2009

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!

Sunday, October 11, 2009

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!

Friday, October 9, 2009

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

Wednesday, October 7, 2009

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!


Sunday, October 4, 2009

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.

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!

Mom.me: 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

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!!!

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.