Monday, June 15, 2009

Blueberries!


Blueberries are a BIG hit in our family. We can't keep a container around for much longer than one sitting. Add one more person to the mix!

Joaquin LOVES blueberries and he ate them in halves. This is his first fruit that we haven't had to puree or mash. I just cut them up into halves and he chewed each one up. So fun! I think we're on to something here. Maybe my Vita Mix won't be needed as much anymore. Very exciting!

Sunday, June 14, 2009

Philadelphia Postponed

We've decided to postpone our revisit to the Institutes. We probably won't be going until November. We were originally scheduled to go in August but after a conversation with our advocate, we decided it would be best to wait. I had a great conversation with Susie, our advocate, and I actually felt better after talking to her. I was completely honest with her about how little we have been able to accomplish with Joaquin over the past few months in terms of our goals.

We've been busy and honestly a lot of Joaquin's program has not even been started. There is nothing worse than writing those words. I feel like I am failing him as a mother right now. He is still getting his Early Intervention therapies 5x/week but there is sooooo much more that I could and should be doing with him. Talk about mother's guilt.

When I get down to really looking at my schedule, it is pretty crazy busy but there IS time to fit in his program. However, I'm lacking the energy and enthusiasm that it takes sometimes and I usually want to spend my free time loving on Joaquin not "working" with him. Again, it's not supposed to be WORK and in fact, the program is supposed to be fun and enjoyable but I just feel like I'm overwhelmed with it. With the diagnosis. With the prognosis. With the responsibility. With the paperwork. With everything.

There are days when I want to throw in the towel. I want to forget about the Down syndrome and just know Joaquin. I want to accept him for all that he is right in this moment and to stop worrying about the future or how much his brain is stimulated or developed.

This job called parenting is exhausting.

So, I will take Susie's advice and start from the beginning. Taking it one step at a time. Starting with one aspect of the program and trying to accomplish it, then slowly adding more when I can. Any little bit is better than nothing. And I will remember that Joaquin is thriving no matter what by living in an active, stimulating and loving home. Thank God for that.


Here is Joaquin at the end of the day. Exhausted...just like Mama!

Sunday, June 7, 2009

Roll Call

DS Bloggers

Are you coming to the National Convention this summer in Sacramento? Do you blog? If so, please check out DS BLOGGERS and get your custom made badge. I can't wait to meet everyone in person. I'm so excited!

Tuesday, June 2, 2009

Honey Bear


Honey Bear....I love you!!!!

Joaquin can drink from a straw! Yahoo! Thanks to the Honey Bear Sippy Cup. We are so excited!

It just took being consistent. We've had this thing around our house for a long time but I just didn't give it the effort and consistency that Joaquin needs. After one week of working with it, basically squeezing the bear so that Joaquin knew it had liquid in it and then waiting for him to close his mouth around the opening, he figured out how to sip a straw!

Another milestone to celebrate! One step closer to weaning!

A Little Dream of Mine

Have I ever mentioned that I have this dream of becoming a yoga instructor for special needs children... a kind of mommy and me program? I have this dream and vision of Joaquin as my model as a child and then, as he grows, my business partner. And then one day teaching his own classes and starting a little franchise. I love my little yoga dream.


Here is a photo of Baby Joey and Joaquin hanging out together. So cute!

Thursday, May 28, 2009

Dancing Ladybugs

A really cool thing happened yesterday and I just have to share.

I was going through our digital camera and came across a cute video of Joaquin playing with his new Dancing Ladybug music box and I was watching and listening to it on the camera with Diego and Mateo on our couch. Joaquin was at my feet and seemed to be listening too. Then, he went crawling off with a purpose and crawled half way across the living room floor and around to the fireplace where we keep a lot of his toys. The Dancing Ladybug music box is one of many toys stored there and Joaquin went directly to it and started to play with it. It was AWESOME! He completely understood what he was listening to on the camera and decided that he wanted to play with it after hearing it.

Isn't that cool?

Here is the video we were watching...



There is a very sweet story about the Dancing Ladybug music box. A few weeks ago we were visiting with our dear friends Natasha and Stephan in San Francisco and they have a beautiful daughter named Avila. We had the pleasure of hanging out and playing with the kids and Joaquin discovered Avila's music box. Natasha wound it up for him and set it down and it was so precious. Joaquin watched and listened with such focus. Then he did his little head tilt and started doing his little wiggle dance to the music. It was a sweet moment and I had thought to myself that I would have to find something like that for Joaquin. We left San Francisco and our friends and it wasn't until the following day that I needed to get something out of my purse. Lo and behold, in my purse was the Dancing Ladybug music box. Natasha and Stephan had somehow snuck it in my purse so that Joaquin could have it. Thank you again for such a lovely surprise. Joaquin LOVES his music box from Avila.

Tuesday, May 26, 2009

Signing Times


Joaquin is communicating via sign language and it's so darn cute.

His favorite is "more" and "all done" always followed by his clapping applause and huge grin. He has other ways of communicating that he wants "milk" and it's more of a head tilt towards mama's chest rather than the actual hand sign for milk. He is also verbalizing more with purposeful sounds. He will also dance on command. His favorite is when he has had enough of his brother Mateo and he pushes him away with a big grunt sound that I'm sure will become "NO!"

It's wonderful to see his communication skills blossom and I'm hopeful that he will be able to make his needs known by signing before he can talk. We are also supposed to be using a communication board with the words "yes", "no", "maybe" and "I don't know" on them but we haven't gotten in the habit of using this yet. It's not as easy to incorporate this into our daily routine. Signing is just so easy and natural for me but I can see where having the ability to use the communication board would also be very helpful as he gets older.

Here are some photos of Joaquin playing and cheering, one his favorite things to do these days!


Tuesday, May 19, 2009

Baby Food, Inc.

On Sunday, I spent the day with Lisa and made baby food for our little boys. It was so much fun. I don't know why I never did this with my other two guys! It was much easier than I had imagined. Here is Lisa's post with pictures.

Could be an exciting business adventure?!?

Thank you again Lisa for showing me the ropes and how fun and rewarding it can be to make homemade babyfood. Now I just wish I had a bigger freezer!

Monday, May 18, 2009

"Human beings are not better off without Down syndrome."

"I live in a nice house in the country, I keep five horses and as a family we are comfortably off. For all these things people envy me. But I have a child with Down’s syndrome and for that, people pity me. And I am here to say: wrong. Wrong, wrong, wrong. I am not to be pitied but to be envied."

These are some quotes from an article published in the UK Times by sportswriter Simon Barnes back in November of 2006. It's titled I'm not a saint, just a parent.

It's written with that great British humor and wit. If you get a chance, please read it. I love it. Thank you Sharon and Laurie for sharing it!

Thursday, May 14, 2009

Three's a Charm and Four is...

Crazy?!?

No way!

We have a new baby in the house!!! Well, at least for 4 days out of the week.

I am currently babysitting a 12 week old baby boy named Joey and he is the cutest, sweetest thing! He is so tiny next to Joaquin. All of a sudden my baby boy looks HUGE! Joey also happens to be blessed with a little something extra so it's my privilege and pleasure to help raise him while his mom and dad are working. I hope this is the beginning of a life long friendship for Joaquin and for our families.

It has been a really smooth transition so far and the boys love little "Joe-Joe." When Diego wakes up in the morning, he searches the house to see if the baby is here yet. Mateo said he loved him today. Joaquin is mesmerized by him. I will say the biggest challenge is loading and unloading the car, thank goodness I have a minivan!

We look forward to watching baby Joey grow and develop and thrive. He's ADORABLE. Check out his huge eyes! He's so inquisitive and alert. He's even rolled from his belly to back for me on his first day here and it looks like he is ready to roll from his back to his belly next. Go Joey!!!!!



I was secretly hoping that by taking care of Joey that my urge for more babies would be cured. I'm afraid not! Going from 3 to 4 boys is not so bad! Bring it on!.....No worries Hector....I'm all talk!

Wednesday, May 13, 2009

Our Own T21 Afghan

It came in the mail yesterday.

Our very own T21 Afghan made just for Joaquin.



He loves it and so do I. The colors are gorgeous, they compliment his nursery bedding (and his eyes!). Thank you so much Chandos for sharing your talent with us. We love it and look forward to staying cozy and cuddling in it for years to come.






We can't wait to get the "official" afghan sometime this summer.

ONE BLANKET. MANY STATES. MANY COUNTRIES. HUNDREDS OF FAMILIES. ONE COMMON THREAD!

Sunday, May 10, 2009

Happy Mother's Day


It was a perfect Mother's Day. Joaquin took his very first bike ride today in the chariot next to Mateo and pulled by his Papa. Mama got the afternoon off to ride with her girlfriends and view the David Lubin Garden Tour in East Sacramento. Later on, after dinner with Nana, Grandpa and Aunt Sarah, we went bowling. Another first for Joaquin. He loved the music, the sounds, the bowling ball, the pins, everything. Joaquin stayed up way past his bed time, red eyes and all, so as not to miss a thing! It was a really full and beautiful day. Thank you God for blessing me with my family. Being a mother has always been a dream of mine, something I knew I always wanted to be since I was a very little girl. Today is a great reminder that I am living the life I dreamed of...I'm a MOM!

Wednesday, May 6, 2009

Breakfast of Champions

I just got finished feeding Joaquin his breakfast and I thought I would share what he had today.

He nursed around 7 am right when he woke up and then spent the morning playing with his brothers. Yes! He actually plays with Diego and Mateo! In fact, this morning Mateo played "catch" with him by rolling a ball back and forth on the floor for about 30 minutes while I helped Diego with his homework. At 8:30 am, I fed Joaquin his breakfast. I mixed a jar of warm organic applesauce with a couple tablespoons of brown rice cereal, a teaspoon of flaxseed meal, a teaspoon of coconut oil, a few pinches of cinnamon and his morning supplements (Kyo-Dophilus, Folacal, and B12) ground up and mixed so he doesn't notice them. He gobbled it up and finished it off with some water from an open cup and now he is back to playing on the floor with his brothers.

A breakfast of champions! Now...if only his mom would eat as healthy in the morning!!!

Saturday, May 2, 2009

1st Anniversary

One year ago today, we got the call from our pediatrician telling us that our three month old son tested positive for Trisomy 21. It's a day I will never forget and a day that will always hold a special place in my heart. It's the day my life changed forever. What a difference a year makes. One year has passed and the fear of the unknown is gone. The misconceptions have been replaced with stories of hope. The beauty of imperfection has been embraced. We truly feel blessed with the gift of our son.

Today, Joaquin also woke up with his two front teeth. They have broken the surface. It's been at least 9 months since he got his first two teeth on the bottom, now these two will join the others to make a total of 4 teeth! Thank goodness they have broken the surface. He has had some sleepless nights due to the pain. For weeks his top gum was swollen and red. Soon his smile will change. That infectious, joyful smile will be filled with his pearly whites. Stay tuned for pictures!

Friday, May 1, 2009

May Day


Happy May Day! Spring has sprung. I have a feeling this season will be full of new beginnings.

Here is our gang on Easter at my brother Zach's apartment. Diego (6), Mateo (4) and Joaquin (1) love to hang out and play with their cousins Jolie (1) and Jillian (2 1/2).

Tuesday, April 28, 2009

New Kids on the Block



Meet Sheridan, Gabby, John Michael, and of course Joaquin. These are the new kids on the block....or at least the newest members in Sacramento with a little genetic enhancement as Sheridan's mom, Lisa, calls it.

We met last month for a playdate and had a wonderful time. I can't wait to watch these kids grow up together and I look forward to forming a lasting bond with the moms as well. It feels good to have our own little community of families on the same journey.

Sunday, April 26, 2009

Picked Apart

Wowza!

I am shocked at how my baby was handled just the other day. I have to leave out some of the details out of privacy for the person involved but I had to literally hold my jaw closed when I saw how Joaquin was treated the other day.

So, how do I explain this without giving away too many details? We met someone for the first time who works in the field of special needs and academia. I've been looking forward to meeting this person based on reputation. I had really high hopes and expectations. We had an opportunity to meet the other day.

This person held out their arms to hold (I thought) Joaquin when we first met. Instead of holding or hugging or talking with Joaquin, this person proceeded to inspect my child. First his feet were grabbed, looking for the sandal gap. Then his hands, literally turning both hands upside down to see if there was a simian crease. Then his shirt was lifted up to look for I don't know what. Then this person tried to get the baby to stand up on the table facing out and mentioned something about the fact that Joaquin had pretty good tone. All this time, Joaquin is trying to make eye contact with this person and arching his back to try and face this person. Joaquin is extremely curious, social and loves to look and hold people's faces but there was no opportunity for him to do this as he was being inspected. At this point, Joaquin was reaching for me so I grabbed him and this person proceeded to tell me that Joaquin had a mild strabismus but it "looked good" and that his facial features were mild. Then this person asked me if Joaquin had trouble with his cervical spine. Oh. My. Gosh. I had no idea my baby was going to be this persons next guinea pig or anatomical model. Joaquin is a baby for goodness sake. A baby....first. A baby who is darn cute....second. A baby who has Down Syndrome....third. We weren't at the doctor's office, we weren't at a clinic. We were at a youth sports event with other children and families that were all hanging out. It was so surreal.

After this really crazy, unusual, uncomfortable few minutes of interacting, this person then proceeded to tell me that Joaquin was a real cutie. Thanks.

I was really quite shocked by the whole interaction and a little confused and puzzled. I can understand that this person was probably just curious and wanted to see the "markers" up close and in the flesh. Maybe this person was "showing off" a bit and wanted me and those around to know just how smart this person could be. I don't know. What I do know is that my hopes and expectations were met with a big dose of disappointment. I guess not everyone is blessed with the sensitivity chip.

Friday, April 24, 2009

My First Step

I took my first step to educate a friend about the "R" word yesterday.

I had to do it. There have been too many times I have let it go (not with this one particular person but with friends or family) and I decided that I HAVE to take a step towards educating my circle of friends when the opportunity is there. In the interest of privacy, I will omit the details of this specific interaction, but I will say that I did speak up and feel that I did it in a way that was non confrontational and hopefully effective.

Now it helped that this all happened on Facebook so I was able to do it with typed words. When I have to say something live and in person it will most definitely be more challenging. But, I took my first step and it feels good.

Wednesday, April 22, 2009

Fun Times!


Joaquin loves the slide!

Saturday, April 18, 2009

Angel Face


I could stare at this face for eternity. His long dark lashes. His gorgeous skin color. His perfectly shaped head. His adorable button nose. His soft kissable cheeks. He's so beautiful to me.

Friday, April 17, 2009

Tres Amigos



Look how tall Joaquin is getting!

Milestones


Another milestone!

We celebrate every single one.

Joaquin is officially sitting up on his own and by this I mean he is able to go from a prone position all the way to sitting up to play...all by himself. It's really cute and this milestone kind of caught us off guard. A nice surprise!

Wednesday, April 15, 2009

A Beautiful Couple

A few fellow bloggers discovered this amazing photographer who often photographs children and adults with DS. Her name is Conny Wenk and she just shot what looks to be an engagement session. I have to share it too. Look at this gorgeous couple.

Andrea & Christian

I can't wait to see Joaquin grow up to be a handsome young man!

Monday, April 13, 2009

Cutie Pie


Hi there!
My family thinks I'm pretty cute. What do you think? Hope you all had a beautiful Easter holiday!

Wednesday, April 8, 2009

Monday, April 6, 2009

Disneyland


Joaquin made his first trip to Disneyland this past Friday in honor of his Big Brother Diego's 6th birthday. We were at the park when it opened at 8 am and we left the park close to 11 pm. That's almost 15 hours of Disney. Whew!!

Joaquin was an absolute angel throughout the trip. The highlight for the whole family was "It's a Small World". We were able to time it perfectly after a little nap and he was completely intrigued by the whole ride. He looked up and around and side to side the entire ride. It must have been the music, the lights, the repetition and the adorable doll faces smiling at him. It was a priceless moment for the entire family.

I have absolutely no pictures to post from our day because we forgot the battery pack for our camera. We did buy a disposable camera but who knows when we'll get those developed!

I found it interesting that I didn't see a single child with Down syndrome at Disneyland that day. I saw two adults, one who was in a wheelchair, but no children or babies. I was really looking too.

It was great to take the whole family on a vacation, even if it was only for one day. It was good for us to get away from the usual grind, take a day off of school and therapies and just enjoy our time together. It really is the Happiest Place on Earth.

Monday, March 30, 2009

Spread the Word to End the Word

3-31-09

It's time.

It's time to stop using the "R" word (a.k.a. "Retard"). Educate yourself, educate your family, educate your friends, educate your neighbor, educate a stranger. The hurtful and casual use of this word needs to stop.

Why?



Because it hurts him...and millions of his peers. Please spread the word to end the word. Do it for Joaquin. He deserves respect.

For more information on this effort, go to Spread the Word to End the Word.

Friday, March 27, 2009

The Flirt


We have a big flirt over here! Joaquin has discovered that he can charm the masses with his smile and coy head tilt. Oh my gosh is it ever cute. Then, after he reels you in with his grin, he'll start wowing you with his signs...waving, followed by some claps, and then again the smile. I have got to get this stuff on camera!

Saturday, March 21, 2009

3/21: World Down Syndrome Day


Today is World Down Syndrome Day...3/21...in honor of the three copies of the 21st chromosome.

Today, there is still a lot to be done in terms of advocacy, education and acceptance for children and adults with "designer" genes but we have come so far.

I watched a show on HBO called "Educating Peter." It's a documentary about a boy with DS who is integrated into a public school in the 3rd grade back in the early 90's. It actually won an Academy Award for Best Documentary Short Subject in 1992. I look forward to watching the sequel "Graduating Peter" which continues to follow this boy through high school. If you have HBO, check it out. There were parts that were very difficult to see and watch but the end result is extremely heartwarming and positive. We've come a long way since the early 1990's even.

Today, I have fewer days of worry or fear or sadness in regards to Joaquin's diagnosis. I can feel with each passing day, week, month and almost a year that I am growing stronger and I am honored to be on this journey. I feel blessed and special. I feel loved, supported and cared for. I am grateful for my family and friends. I appreciate my husband and I am thrilled with our family of three boys. Joaquin is going to reach his potential and love his life and that is all that matters at the end of the day.

Happy World Down Syndrome Day!

Thursday, March 19, 2009

What to Say?

So.....I'm not sure what to do or say.

We have tons of activities going on all the time and it seems as if my minivan is a gathering place for preschoolers and kindergartners these days. When I pick up Diego from school, I usually park right outside the school and have the side door open so I don't have to get Joaquin and Mateo out each time I go. It's often that a few kids will jump in to say hello to all of us in the car and look at the baby. Recently we've also been doing a lot more playdates and carpools and there are lots of kids in our lives. This is where my question comes up.

Joaquin does not have a strong tongue protrusion but often when relaxed, which is usually the case when he's in his car seat, his tongue will stick out. Also, lately, he is teething and it seems like his tongue is one of his favorite things to play with in his mouth. The number one comment made by kids when they see the baby is "Why is his tongue sticking out?" which is followed by laughter. Now, this isn't usually taunting laughter. I think it's fairly innocent. I believe it's because every school aged child has been told not to stick their tongue out so when they see a baby doing it, it's fascinating and hilarious.

What do I say to that? How do I explain? Is this an opportunity to educate and inform? Or do I continue to do what I normally do which is say something like "oh, he's just relaxed and his tongue sometimes sticks out" or "he just likes his tongue" or "isn't he funny?". I find myself struggling with how to give an appropriate response. I feel like this is just a small "taste" of what is yet to come as far as managing other people's reactions.

Even today, I was on campus at our local state college. Joaquin is a guest patient for a Mock Physical Therapy Clinic for the students once a week. I was walking to the clinic and enjoying the sun and the breeze with Joaquin in my arms and he was having so much fun with the wind. He was smiling and sticking his tongue out almost as if to taste the air. A couple of young girls walked by us and caught a glimpse of him and smiled but as soon as they passed by I heard them giggle and say "did you see his tongue sticking out?" It broke my heart a little bit.

So...again....I'm not sure what to do or say.

Wednesday, March 18, 2009

Happy Day

We celebrated St. Patrick's day yesterday as a family. We took photos, we shot silly videos, drank beer (mama and papa only!) and danced after dinner. We remembered Grandma Eleanor in Heaven. One of my favorite poems is an Irish blessing. I still keep the little card we got at Grandma's wake and it says:

May the road rise to meet you.

May the wind be always at your back.
May the sun shine warm upon your face, the rain gently upon your fields and until we meet again,

May God hold you in the palm of his hand.






The boys with their clover shirts

Saturday, March 14, 2009

The China Study

A comment I made on my last post has got a lot of people asking me why we gave up dairy. It was one of the first recommendations made to us by the professionals at the Institutes. They have a whole day devoted to achieving physiological excellence during the lecture series and nutrition is a huge part of that. They have been witness to some amazing transformation in their children based on the elimination of dairy alone. There are way too many reasons why we decided to give up dairy and I really don't want to start a debate on my blog about it because that's not what this is about. All I can say is that I have done my research and I feel absolutely confident in our decision to eliminate dairy as much as possible from our diet. Again, we slip up at times and my older boys occasional have it at other people's homes or at school but at our house, you will not see any milk or dairy products in our refrigerator.

For anyone interested in the science behind the reason why "dairy is scary", I urge you to read The China Study by T. Colin Campbell. It is one of the best books I've ever read. It changed my life. It is such an important book. I believe that this should be required reading for every health professional around the world, especially nutritionists and doctors who deal with cancer, heart disease and diabetes. PLEASE, go out and buy this book! Check it out at the library if you want to save money. If you don't have time to read, get the book on tape and listen to it on your commute or on your next road trip. It is a remarkable book.

Friday, March 13, 2009

Breakfast Club



Here is a typical morning as I get breakfast ready for the boys. Joaquin sits in his Stokke chair like a big boy. He LOVES to be a part of the action.

Thursday, March 12, 2009

Me and My Shadow



Joaquin discovered his shadow this past week now that the sun is shining again! Here he is on my parent's deck. He loves to wave his hands and watch his shadow move. It's simply adorable.

Monday, March 9, 2009

Mark Your Calendars!

The National Down Syndrome Congress' 37th Annual Convention is going to be right here in my own backyard....SACRAMENTO!!!! I am so thrilled. This will be our first experience and I am sooooo looking forward to it! Our own local DS chapter, the DSIA, will be helping with the event and they need approximately 300 volunteers from the community.

So....mark your calendars!!! The dates are July 31st- August 2nd, right here in downtown Sacramento at the Convention Center. Anyone who lives in the area and doesn't plan on attending the conference should PLEASE volunteer to help out. For anyone interested in volunteering their time, please go to Volunteer Sign Up Form. We want the experience in Sacramento to be a super positive one.

To all my fellow bloggers, I can't wait to meet you! Please let me know if you are coming into town for the conference and if you have questions about the area, places to stay, places to eat, family friendly adventures, etc. I would love to host a little get together to meet you all, so as it gets closer we should all get in touch with one another. How fun would that be?!?

Saturday, March 7, 2009

30 Meters and Counting...

He DID it!

Joaquin has a crawling victory! He has achieved his goal of crawling 30 meters a day. He is also crawling over obstacles like rugs and piles of clothing. This is one of our goals for his Intensive Treatment Program at the Institutes so I have emailed them with the good news and look forward to their response and whatever new goals they will have for him. I'm sure it will be an increased distance with the goal to creep on hands and knees....we'll see!

Another one of his goals is to stand assisted for 30 seconds. We put him in a sit position and then after he grabs our thumbs, we pull him up into a stand position. He has been able to do this for quite some time. Often times, he'll go for up to a minute holding on to our thumbs. So, we just try it every day, a couple times per day to build his endurance.

Way to go Joaquin!

Friday, March 6, 2009

People

This weeks People Magazine has a great little article about a dance class for children with Down Syndrome. It is such a positive, lovely article with some adorable pictures of boys and girls dancing and posing. I LOVE it! Check it out if you can.....and look for the Joaquin look-a-like! There is a little boy on the opening photo that looks like Joaquin in about 8 years...DARLING!!!!

Friday, February 27, 2009

Friday, February 20, 2009

The Upside of Down

Things are looking up. Joaquin is still battling some congestion but after two rounds of antibiotics back to back, his ears look good. He is eating again and seems to be in the midst of a reawakening of his senses and his abilities.

It's funny how life is so up and down. One day is great, the next day not so much. Bumps in the road. Tripping on our own feet as we make our way down this unknown path of raising a child with special needs. One thing is for sure, I am completely exhausted and worn out at the end of the day but I have an endless reservoir of energy when it comes to Joaquin. I don't know where it comes from but I'm so grateful for it.

We got an email this week from our local DS organization about a Spanish speaking couple at a nearby hospital who had a baby with DS and they were looking for a peer to talk to in their native language about their fears and concerns. Hector was generous enough to take the time to call them and help them through their initial shock at the hospital. We might be meeting with them this weekend at the hospital as well. It feels good to help other parents out but I found myself worrying about them and worrying about the baby. Would they get all they need for their child? Would their language barrier hinder them in getting all their benefits and services? They live out of town and I'm not familiar with where they live so I just hope and pray for them and their child that they get what they need. I need to find out if the books that were my lifeline are published in Spanish....Gifts, Road Map to Holland, Expecting Adam, etc. I am stressed about their situation and want to help more but I have to take a step back and trust that there is a system in place that will make sure they are guided on their path. We can only do so much. Our plate is pretty full.

Joaquin has a full schedule these days. We've taken a step back on the Institutes program while he's been sick the past 5 weeks so we will start that back up little by little this week, adding more and more of his program as he feels better. In addition to the program we do at home, he receives Physical Therapy twice a week, one time at home and one time in the water. He receives Occupational Therapy one time a week. He receives Music Therapy one time a week. He receives Speech Therapy once a month and Hector and I are currently taking a "Hanen Method" class once a week that is teaching us new ways of communicating. It's quite busy. Borderline crazy busy when you add in both boys school schedules with drop off and pick up, Diego's after school art and science classes, Diego and Mateo's gymnastics classes and T-Ball practices and then Diego's swim team starting up at the end of the month....oh yeah...and mom and dad training for a marathon in June.....oh my goodness!!!

Joaquin is beginning to eat again....thank goodness!!! He is also starting to use his index finger and thumb to pick up his brown rice puffs on his high chair tray. He hasn't figured out how to bring them to his mouth but he sure loves picking them up and dropping them all over the floor. These puffs are great and a perfect solution since we can't do Cheerios yet due to the wheat in them. Despite his congestion, Joaquin looks great these days. He looks more and more like a big boy every day. He's still such a baby but I can see him coming into his own. It's so very exciting.


Wednesday, February 11, 2009

Frustrated

I'm a bit frustrated right now. Joaquin seems to have taken a step backward with eating solids. For a short time, he was doing great and eating solids about three times a day, about 16-20 ounces. Now, he is barely taking in a few ounces of solids a day.

He will open his mouth, making chewing movements with his mouth and then happily spit it out or let it drool out of his mouth. He does this all with the biggest grin on his face which is adorable but I'm still frustrated. He was doing so well before he got his ear infections.

Maybe he's teething, maybe he still has some residual pain from his ear infections, maybe his stomach is upset from the antibiotics that he's still on. Who knows?

He still nurses like a champ and we will continue to do this until he can eat solids consistently but at this rate, I feel like he'll be nursing forever. I know I need to be patient but feeding children is one of those basic needs things that a mother feels completely responsible for and right now I feel like I'm failing.

So....I'll keep trying. Every day. And I'll keep wiping up the green beens that have been sprayed all over my clothes, his high chair and the kitchen walls. I know he'll figure this out. Eventually.

Sunday, February 8, 2009

Hands and Knees


Our boy is on his hands and knees!!!!

Joaquin has been getting around lately by army crawling or what his brothers call "inchworming". He gets everywhere he wants to and it's definitely time to babyproof the house. He LOVES the bathroom....must be the tilework in there. If he hears the shower, he wants to be in the bathroom. This baby loves the water. He loves hanging out in the boys' room too (there is a lot of action in there) and if there is a cord in the house, he's got it...hence the need for babyproofing.

He's mastered movement for the sake of transportation and it's so exciting for us. We were able to take down the ramp and reconstruct his nursery. He doesn't need the ramp to motivate him to move. Yahoo!

Then, just this week, the week of his one year birthday, he is getting up on HANDS AND KNEES! He hasn't actually creeped this way but it's oh so close. He will get into position and rock a little bit and plop down again. The fact that he is lifting his belly off the ground is terrific.



With his first birthday also came Joaquin's first official illness. He has had two ear infections, two doses of antibiotics and about 3 weeks of interrupted therapy. Poor baby! It seems that the tubes that were placed a few months ago were a blessing and a curse. He can hear now with no problem but now he is predisposed to infections. Bummer. Since he's been sick, he has been sleeping a bit more than usual and has not been eating as much but this hasn't stopped him from continuing to develop. Our goal with the Institutes is for him to move 30 meters a day, and I think we'll be calling them in a week or two to say that the goal has been achieved. We aren't due back until August so we are THRILLED to have to revise his physical goals ahead of schedule.



Every day seems to bring some new development in Joaquin. He is more social than ever, super giggly, has discovered his yelling voice (he's gotta keep up with his brothers somehow!!) and he is reaching out to his favorite people with his arms up in the air.



Here are some photos of Joaquin on his actual birthday trying his first ever vegan carrot cupcake- bought at the local co op since my version of it completely flopped one hour before the party started. We celebrated with our family and a small group of close friends at our local pizza parlor, Luigi's by the Slice, and ordered the "Joaquini Special" (a no cheese, pesto, veggie pizza), and Hector showed a slideshow of our year with Joaquin on the big screen. It was a wonderful night to celebrate a wonderful year.



This last photo is of Joaquin in his PJs right before bed playing with the strings on his balloons. He was a very happy boy.

Friday, February 6, 2009

A Story to Share

I must share this story, this true story, that I found on a fellow bloggers site called "Bridget's Light" living in world of possibility. This story written by Candee a couple years ago is a perfect illustration of how we can change the world with just changing our perspective. Here it goes....

A Story about My Two Daughters

How to Live in the World of Possibility

By Candee Basford

My first daughter was diagnosed with Down syndrome soon after she was born. Her language is delayed. Her abstract thinking abilities impaired. She is easily distracted and sometimes refuses to follow or listen to directions. She has some autistic-like tendencies. She has a bilateral hearing loss. Hearing aides have been recommended but she refuses to wear them. She has an uncorrected vision of 20/200 and a corrected vision of 20/60 at a distance. She is highly farsighted with nystagmus. She can be extremely stubborn and sometimes makes inappropriate comments. She can perform some functional tasks but has trouble with basic tasks like counting money and making change. She can follow simple cooking instructions. She can make her bed.

My second daughter is a sophomore in college. She is majoring in science. She loves anatomy and physiology, biology and anything connected to science. She loves to read but because of a vision loss she needs to take frequent breaks. She has a hearing loss so it helps if she can see the speaker and keep background noise to a minimum. Recently, she has become very interested in sketching portraits. Because of this new interest she is taking a course in advanced drawing. She is popular – the life of the party. She loves to flirt – in fact, her senior class in high school voted her most flirtatious. She has many friends. She has the ability to make other people feel welcome and loved. She is persistent, loves having fun and has a great personality. She loves to dance, travel and write to and receive letters from friends. She dreams of starting her own rock band.

The story of my two daughters illustrates the power of our words and our perspectives. It illustrates the power of the scientific processes and the labels we continue to use to diagnose, predict and sort people.

How? Both stories are about the same person, my daughter. The stories “differ in the way they are constructed – in their purpose – in their consequences – and in the assumptions they shape.” (O’Brien & Mount)

The story about my "first daughter” was constructed from exact words and phrases found on my daughter's school and employment related documents, written in the language of professionals, educators, psychologists and job specialists. It tells what she can’t do, won’t do and why. In this story, she is in need of repair, and thus in need of lots of professionals to fix her. The purpose of this story, in part, is compliance with federal and state regulations. The first consequence is that we (and the rest of society) accept the story as true and begin to adopt the language and beliefs and practices. Once that happens, the sad consequence is segregation, a client’s life, a planned life surrounded by professionals. The assumption in the story about my first daughter is that she is needy, broken, difficult and – most important – that her life should be safe and predictable surrounded by the service system.

The story about my “second” daughter was constructed from love, experience and by paying attention to gifts. It is told from the perspective that my daughter has immeasurable capacity once she has a valued and connected life in her community. The story about my second daughter is shaped (and lived) from a capacity perspective. This story is told in “context” of a life connected to others, a life that unfolds in exciting and unexpected ways precisely because of the many relationships she has. The consequences of this story are community and risk taking and surprises. The consequence is citizenship. The assumption in the story about my second daughter is that she is person who has capacity, interests, gifts, and contributions especially when her life unfolds in the presence of and participation in community.

The story of my two daughters represents two different worlds – the world of measurement and the world of possibility. Often, as my daughter grew up, I felt the overwhelming gravity of the world of measurement, pulling her toward specialized services and segregation with the promise of safety, and simplicity, and repair. In the world of measurement you get to know others by measuring and comparing. But it is the world of possibility that I find most powerful and promising.

The story about my second daughter is the story of possibility. It is the NEW story that we must learn to tell. It is the story told (and lived) from a capacity perspective, from a community perspective. We can learn to tell this NEW story by first examining our own perceptions and advocacy efforts. We can learn to tell the NEW story by listening, seeing, asking, discovering and taking action in the direction of gifts and capacities. We can learn to LIVE the NEW story by supporting rich relationships and taking actions that lead to more inclusive opportunities in our schools and in our communities, for it is these rich inclusive and ordinary experiences that will yield the context necessary to live in the world of possibility.

Copywrite 2006, Candee Basford

Monday, February 2, 2009

Happy 1st Birthday!


To my dear sweet Joaquin,

Happy Birthday my love. My baby boy. You are one year old today and I remember the day you were born so clearly. It has been one amazing year.....so quickly it has passed yet so much has transpired that it feels like a lifetime ago.

When I look at this picture of me carrying you in my belly, I can't remember who I was then. I have changed so much as a result of your birth. So much for the better. You bring out the best in me and continue to challenge me to look inside myself and find the truth. The truth and beauty of imperfection. The sweet surrender to simplicity and the simple joy in the here and now.

Your presence is our present....our greatest gift. Thank you for blessing me, your dad and our family. You are so loved.

Mama

Sunday, February 1, 2009

25 Things....















25 things I love about you Joaquin....

1. Your smile.
2. The color of your eyes...a combo of gray, blue and green.
3. Your eyelashes...black and slightly curled.
4. The way you light up when you see your brothers.
5. When you reach out your arms to me.
6. When you play pat-a-cake.
7. Your soft belly when I kiss it.
8. Your giggle.
9. Your wrinkled palms and soles of your feet.
10. Your starfish hands.
11. The way you inchworm around the house.
12. When you tap your toes on the floor.
13. When you wave bye-bye!
14. Your baby chatter.
15. When you dance to the music.
16. Your sweet disposition.
17. When you get grumpy.
18. The way you tuck your hands and feet under us when you sleep in our bed.
19. When you fall asleep on my shoulder or on your Papa's chest.
20. When you squint at the sun.
21. Your soft fuzzy head and the way you tilt it when you are shy.
22. Your chubby cheeks.
23. Your button nose and your two tiny sharp teeth.
24. Your wet kisses and sweet baby breath.
25. Your gentle soul.

Friday, January 30, 2009

A Letter from Big Brother Diego (age 5)


Dear Joaquin,

Baby, I like you so much because you are so cute and fuzzy. I am happy to be your big brother. I like to play with you and put your toys in front of you so you can crawl to get them. I like to call you “Softy” because you are so soft. When you grow up some day, I’ll miss you as a baby because you are so cute. When you are 5 years old, I’ll be 11! I want to teach you how to play soccer, basketball and baseball. I love you very much.

Diego

Thursday, January 15, 2009

Baby Steps

A moment of sadness. It was a very quick fleeting moment but I had it nonetheless. I'm not sure what it was exactly but I felt it and then quickly it was gone.

I attended a preview music class at our local Gymboree. I did many of these types of classes with Diego and Mateo when they were young and it was a fun way to meet new parents and babies around the same age. This was my first time taking Joaquin to a formal class setting where I didn't know the teacher or at least one parent in the group. I am a member of a local parent's group in town where I attend lots of different play groups and events with parents and children that I know quite well but I wanted to try something new with Joaquin, to take a step out of my comfort zone.

This Gymboree music class was unchartered territory for me, a brand new experience for the two of us....our first step toward full inclusion. Why not take him to a "typical" music class for a baby his age? I signed up for a free preview class while Diego and Mateo were both in school. It was a great class and the teacher had an amazing voice. At the start of the class, we sat down to smiling faces all around, lots of cute babies and moms. The teacher started off with a welcome song. It was then that I felt a pang of emotion. I began to tear up and I'm not sure why. I would call it a moment of sadness but maybe it was just a moment of all sorts of emotions wrapped up into one....fear, anxiety, sadness, shyness, pride, hormones? It's moments like these where I am faced head on with the reality that I am on a different journey than most of the people around me. It can feel very lonely. On the one hand, I want to include Joaquin in as many of the same experiences that I participated in with Diego and Mateo and then at the same time, I see a benefit to attending classes or events surrounded by parents who understand our situation and are "walking the same walk" as I am with their own special children. I can see how both scenarios could be beneficial.

Throughout the class, Joaquin was mainly interested in looking at me, watching my face. So I just immersed myself in the moment and it was as if it was just the two of us in the class. Occasionally a mother would ask me "How old is he?" or "He's so cute" and I would return with my own curious questions about their little ones but otherwise it was a special time for Joaquin and me. Focusing in on Joaquin grounded me and I felt more stable in my emotions....I was able to hold it together but a very small part of me just wanted to get out of the room and back to our comfort zone. We stayed and we ended up having a wonderful time. We focused on the moment and living it. The here and the now.

When I try and get to the root of what my feelings were during the beginning of class, it's really hard. I think I've been living in sort of a protected bubble this past year. I've surrounded myself with my support system of friends and family and neighbors, even fellow bloggers, and it has all been a very safe place to be. As I start to venture out into the world and as I take the steps that need to be taken for Joaquin, I'm a bit afraid of what might be out there. I'm afraid of the ignorance and the cruelty.

But maybe the tears that started to well up in me as the Gymboree class sang out Joaquin's name and we sat there, the two of us happy and healthy and living our lives, were also tears of hope. Hope that perhaps everything will be o.k. We were taking our first baby steps together.

Tuesday, January 13, 2009

Baptism

Joaquin was baptised on December 21st at Sacred Heart Church in Sacramento. Many of our friends and family were with us to celebrate this special day. Jose and Virginia are dear friends of ours and we are so happy they agreed to be Joaquin's Godparents. Hector and Jose have been friends for a long time when they met in Mexico City. They are a very special couple, so full of love, and they have always been so kind and caring to all of our children.

Joaquin wore a baptismal gown that was handed down by my Aunt Giovanna from Italy. It is over 50 years old and was handmade in Italy. All three of our boys were baptised in it. It's the only time our boys have worn a "gown" and all three of them looked beautiful in it. Little porcelain dolls.

We had a beautiful brunch after the ceremony at my parents house. Even with the rain, it was a perfect day.

We are so grateful to God for giving us the gift of our son Joaquin.


Jose (a.k.a. Pollo) and Virginia, Joaquin's Godparents.


Joaquin ready for his big day and wearing his cross from Pollo & Virginia.


Joaquin with his Godmother Virginia.

Monday, January 12, 2009

Bye! Bye!

Joaquin is waving bye bye and it is the cutest darn thing you've ever seen!!!! I will try and catch it on camera and share it here on this blog. Oh my gosh, it makes me want to cry it's so sweet.

I have to hold his arm up for him most of the time to help him focus on waving but with lots of practice it's coming easier and easier for him. I'm so proud! I think he's proud of himself to, you should see the grin on his face when he does it.

Friday, January 9, 2009

The Year My Son and I Were Born

Kathryn Soper wrote a memoir about her first year mothering Thomas, her son who has Down syndrome. It's titled The Year My Son and I Were Born, we can't wait until it comes out in March. Here is a little promotional montage she put together. Kathryn Soper is the mother behind the "Gift" book and "Gifts II" that is coming out later this year or early 2010 which one of our essays is included in. Very exciting!

The Future of Prenatal Testing

Where are we going with prenatal testing?

Once again, a fellow blogger has posted a subject that I think about, talk about and write about all the time with people. Please see this post for a most amazing look at the topic of prenatal testing- question of life or death. Malakai's mom takes the words right out of my mouth. I was in tears after reading it.

Just the other day I got an email from a friend who wanted to know more about the startling statistic that I've written about in the past....that 90-91% of pregnancies are terminated when a diagnosis of DS is given after an amnio. This friend of mine asked if the statistic is slightly skewed by the fact that most people who get an amnio are more likely to terminate anyway, hence the reason they are having the amnio. It's a good question and makes some sense but it's still horrifying. I believe this is one of the biggest areas of discrimination still remaining in our society. Life or death decisions are being made based upon a diagnosis that is hugely misunderstood. Please look at my Joaquin. He is the child being aborted.

I also have friends that have brought up the fact that maybe not every parent is equipped to handle a diagnosis of DS therefore it is in the best interests of the child that he be aborted rather than have parents that are afraid or incapable or just plain don't want a child with a disability. I really don't know what to say to that. Like Malakai's mom mentions in her post, what if your child is born "perfect" but suffers a trauma at birth that leads to brain damage? What if your child is hit by a car and will never walk or talk or is now mentally disabled? Are these parents that would have otherwise terminated a child with DS going to fail as parents now? Probably not. I would hope they would rise to the occasion and do what was needed for their hurt child because it is their child. Right?

What if they develop a prenatal screen that tests for autism? for depression? for ADHD? for bipolar disorder? for leukemia? for diabetes? for obesity? for breast cancer? the list can go on and on. Would it be ok to abort based on this information? Where are we going as a society with this kind of testing? I cringe to think of where we are headed.

I am passionate about this topic. I feel moved in ways I cannot explain to reach out to the world and make a change. I don't know how I will do this but I know that I have to. Joaquin is the most amazing child and has every right to be here. Please tell me, what human being is perfect? who would want to live in that world anyway.

My sister in law, Jennifer, just emailed me this creed and I think it explains it all....

THE DIVERSITY CREED
By Gene Griessman © 1993

I believe that diversity is a part of the natural order of things—as natural as the trillion shapes and shades of the flowers of spring or the leaves of autumn. I believe that diversity brings new solutions to an ever-changing environment, and that sameness is not only uninteresting but limiting.

To deny diversity is to deny life—with all its richness and manifold opportunities. Thus, I affirm my citizenship in a world of diversity, and with it the responsibility to….

Be tolerant. Live and let live. Understand that those who cause no harm should not be feared, ridiculed, or harmed—even if they are different.
Look for the best in others.
Be just in my dealings with poor and rich, weak and strong, and whenever possible to defend the young, the old, the frail, the defenseless.
Avoid needless conflicts and diversions, but be always willing to change for the better that which can be changed.
Seek knowledge in order to know what can be changed, as well as what cannot be changed.
Forge alliances with others who love liberty and justice.
Be kind, remembering how fragile the human spirit is.
Live the examined life, subjecting my motives and actions to the scrutiny of mind and heart so to rise above prejudice and hatred.
Care. Be generous in thought, word, and purse.

Tuesday, January 6, 2009

Time flies.....

A post from Hector...

I can't believe it has been almost a year since Joaquin was born. It feels like he has always been a part of our family, I can't even remember what I was like a year ago.

What were my thoughts and what were my hopes?

Mateo will be 4 in a couple of days and Diego will turn 6 in April. Time flies but one thing is for certain, Joaquin's first 11 months feel like a lifetime in all respects.

We cried a bit but we laughed even more. We ran around different places and so many appointments but we sat and gazed at him in astonishment even more. We had countless sleepless nights but with him by our side it felt like such a blessing, listening to him breath knowing that he has nothing to worry about. He will be loved and cared for. Then, in the morning when he wakes up between Jen and I, he smiles, and you know what real love is.