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Advocate Down Syndrome

#29DaysofAwareness February 4th

As part of my #29DaysofAwareness campaign, I will continue to share all things related to my journey as a parent of a child with Down Syndrome. Down Syndrome Consciousness Month gets an extra day in 2016  because it’s a leap year, and I couldn’t be happier to add an additional post to my roster.

One of the things that I have loved about my journey as Gelli’s momma is all of the other amazing parents I have come across through the different communities I am part of. 

I have already written about (on quite a few occasions) about how important DSAPI was in helping Nino and I map out a plan of care for Gelli when she was a peanut. Starting with the Early Intervention Seminar was the best thing we could do to ensure proper care and development of our little one.

Best Buddies is an organization which furthers inclusion here in the Philippines. Together with school chapters, faculty advisors, volunteers, the Citizens group, and of course the students all involved, we are forging ahead one friendship at a time.

The online community has been a source of comfort for me. Being from New York, I have often looked to social media as a way of keeping in touch with family and friends back home. When Gelli was born, social media became so much more than that for me. It became a way to tap other moms for help and questions that I had in our everyday life. Just like I look for inspiration in packing lunches for the kids through searching hashtags, I look to twitter for the current studies and news regarding Down Syndrome and Special Needs.

Through Facebook, I discovered The Down Syndrome Diary. 

Screen Shot: The Down Syndrome Diary

Screen Shot: The Down Syndrome Diary

And of course with the help of the internet, I found the Momma BEHIND The Down Syndrome Diary. Jamie Freeman is Ben’s Momma. She pens the blog Ben Through it All. And she is brilliant. 

Screen Shot: Ben Through It All

Screen Shot: Ben Through It All

Jamie’s idea was simple. She remembered being hit with a ton of medical terms when she was handed Ben’s diagnosis. Jamie was given Ben’s diagnosis while he was in utero so she had time to let it all sink in. She shares very frankly how hard it was to accept that her son had Down Syndrome. Her story is honest and comforting to read, even if I know our diagnoses were handed to us differently. You can read about her story here.

Jamie wanted to try and give someone else who might be handed the same diagnosis of Trisomy 21 something a little different. 

The vision of the diary, when it is full, is to have it published for new parents that have just received a diagnosis to receive.  We are pouring our hearts into these stories with the hopes that someone might find comfort in our words as they are being bombarded with medical terms.

If knowledge is power.

Shared stories are comfort.

Down Syndrome Diary 2 copy

I once read somewhere (or maybe it was in one of the talks that I attended,) that our “Stories tied together is our LIFE.”

We share our stories with others and we connect. Most of the time, you benefit greatly from sharing. I know for sure, I have always benefited when someone is open enough to their story with me.

It’s that gift of perspective that I have often referred to here on the blog as well.

Y’all know what I’m referring to, right?

So, imagine how different the experience would be if you received a diagnosis with a plethora of stories all written by loved ones whose lives were changed by an extra chromosome FOR THE BETTER?

Photo Credit: The Down Syndrome Diary. Check out Tara's blog Happy Soul Project.

Photo Credit: The Down Syndrome Diary. Check out Tara’s blog Happy Soul Project.

So, the moment I found the Facebook page I sent a private message to Jamie in the hopes that I could be a part of this diary that was circling the globe. When she responded, I couldn’t have been more disappointed. The DSD had already had so many story tellers that she had to turn people away. There was no way that all of the volunteer story tellers could fit in that one beautiful leather bound diary after all. 

Luckily, for me, when I broached the subject of possibly starting another diary in another country where we could fill in our entries in Tagalog and various dialects that are prevalent in the different provinces here in the Philippines, Jamie was open to the idea.

Together, we thought it would be a wonderful opportunity for Filipino parents and siblings to be able to share their experiences in whichever language they felt comfortable writing in.

Jamie and I skyped, messaged, and visited with each other Facebook. She planned an awesome Halloween fundraiser so that she could buy all the leather bound journals to send out to all over the world. She has already started pursuing The Down Syndrome Diary Non Profit Status in the U.S. to further her cause of storytelling. 

To date, Jamie has had thousands of requests from parents to be a part of this amazing endeavor.

And we are so lucky we can be part of it all….right…here…

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I was so excited to open my package when I returned home from Cebu with Nino. I was so emotional, I cried.

Thank you Jamie for inspiring us to share our stories if for nothing else, than to help one another.

Down Syndrome Diary 5 copy

I can’t wait to read all of the beautiful stories we have to share right here, in the Philippines.

If you’d like to learn more about The Down Syndrome Diary visit the website or the Facebook page.

If you’d like to learn more about The Down Syndrome Diary Philippines check out the Facebook page.

I can’t wait to sit down with this diary and write just a small piece of Gelli’s story which is so intertwined with mine. Even more so, I can’t wait to pass it on to other mommas and poppas who might want to share their stories too…It’s going to be beautiful.

Would you like to take part in this endeavor with me? Please let me know by commenting below or sending us a message on The Down Syndrome Diary Philippines Facebook page.

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Hi! Here is where I share my thoughts on yoga, cooking, crafting, raising a special child, exploring, eating, playing, and living in Manila.
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Waterside @solaireresort’s BBQ Brunch Buffet has Waterside @solaireresort’s BBQ Brunch Buffet has all the southern fixings and more.

Grilled and smoked meats. Seafood and mixed drinks. Fried chicken and fish and chips. Starters include fresh salads, corn bread, nachos and more. But the kicker comes in the form of a Make Your Own Milkshake bar, and YES, you can order it spiked with your favorite liquor! 

Waterside is only one of quite a few restaurants that you can enjoy  beautiful weekend brunches with your favorite person, the fam bam, or your friends. 

Check out www.mommanmanila.com to see the full menu and what Nino and I enjoyed most.
Creating food together is one of our love language Creating food together is one of our love languages. We flow in the kitchen. I get excited and move too fast, and she grounds me, and slows things down. We can move around one another while still staying in sync. In our own kitchen, there is music that guides us and sets the tone for the meal. Gelli would be in the mix, the boys will set the table, someone makes dessert, and maybe @manila.gent  makes a drink. 

When we prepare our table together there is so much that goes into the process and the ingredients. This mindful movement brings me so much joy when we are all together.

Even more so when we attend classes together to learn new dishes too.  @themayakitchen1 has regular classes offering cooks of all abilities to learn something new when preparing meals for for our families.

Check out my new article on @rappler for @kitchen143 where Gia and I learned from Chef @cocoyventura a few new Pinoy dishes that will definitely be on rotation for #TeamGellibean.

Link in my profile: 

https://www.rappler.com/life-and-style/food-drinks/kitchen-143-learning-lovelokal-the-maya-kitchens-cooking-classes/
Crispy Pata. Is there anything better than perfec Crispy Pata.

Is there anything better than perfectly brined crispy fried pork? 

@manila.gent and I visited @viicsrestaurantph for simple Pinoy fare that hit the spot. Admittedly, after moving here so many years ago, I took a while to warm up to this dish that is one of Nino’s (and my mom’s) favorites. But every once in a while-I won’t feel guilty about indulging in this deep fried treat.

Happy to learn that we can also order for when Mom arrives through @foodpanda_ph too!
The @admiralhotelmanila M-Gallery has opened their The @admiralhotelmanila M-Gallery has opened their doors! @manila.gent and I were privileged to visit the hotel on Friday night with some new friends and we were both so excited to explore some new digs in Manila.

Looking forward to bringing the family back soon!
We were a little early for therapy this morning, s We were a little early for therapy this morning, so @gelliaventajado got to spend a little time with @grace_loedin!

@thevanguardacademyph is still open for enrollment in their summer program, and has a full staff for all therapies and interventions. We really love her school and all of the faculty and staff. It makes a huge difference when you have confidence in the people you leave your child with for learning!
Whipped Feta #Recipe up on @kitchen143 over @rappl Whipped Feta #Recipe up on @kitchen143 over @rappler now!

Link in my profile!

https://www.rappler.com/nation/kitchen-143-dreaming-greece-try-making-easy-whipped-feta-dip/
Thinking about the day I got off the plane in LaGu Thinking about the day I got off the plane in LaGuardia, was picked up by one of my dearest friends and spent the entire day at the beach just catching up on LIFE.

It was a breezy day. Overcast. A little chilly to be in a suit, but it was perfect to catch up with my girl Candy. Sometimes, if you have chosen your friends well, you can pick up where you left off, as if no time has passed at all. 

Just like I did, sitting in that beach chair, feeling the mist of the Atlantic Ocean, and watching the seagulls pick and the seaweed.

Thank you Candy! For the friendship, for dropping everything to come and pick me up. Drive me around and have dinner with me and Fayth. 

Wishing I was sitting on this beach with you right now!!!
Eggs Benny with BBQ Pulled Pork was just one of ma Eggs Benny with BBQ Pulled Pork was just one of many dishes that we enjoyed during #SundayBrunch at Waterside in @solaireresort .

From cornbread, to mom’s potato salad, melt in your mouth whisky cured short ribs, homemade sausages and more. This #BrunchBuffet had @manila.gent and I rolling each other out the door!

Hard to choose which was our favorite from the feast that was set before us!

Brunch is inclusive of some delicious drinks, some Southern smoked and BBQ Fare, and a most colorful sweet dessert buffet by way of Milkshake Bar!
Movie Night at home with the big screen made easy Movie Night at home with the big screen made easy by @lumosprojector_ph!

Summer Lovin’ ain’t over for #TeamGellibean. Hop on over to www.mommanmanila.com to read my full review on how easy this #homeprojector is to use when you want to watch your favorite family film!!

Gelli and I have watched Sharkboy and Lavagirl, Grease, and BTS Videos. Up next? The Sound of Music! 

Want to have your own #LUMOSRAYProjectoe delivered to your home? Stay tuned for an upcoming giveaway, too!

Link in my profile!

https://www.mommanmanila.com/lumos-ray-projector-review/
Missing my @migaventajado The short time I had w Missing my @migaventajado 

The short time I had with this guy in Florida was definitely something I will look back on. Wish we had more time to explore and do some fun things on our own.

Gah. How is this kid 20 years old already?
I remember when he was little and he loved peanut butter, chicken nuggets, Kylie Minogue, and sitting on my lap. He was squishy, in tune with my feelings, and I was always worried that he might have an asthma attack in his sleep so I would nebulize him every few hours. He always looked at new experiences with gratitude and wonder, much how he did while we were in FL together.😍

Praying he continues to strengthen his faith as he grows. 🙏🏻👨🏻🙌🏻

Miss you Miggy!
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