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Advocate Down Syndrome

Hard Conversations about Down Syndrome

The other day, I had lots of emails to answer, things to check off my lists, and meetings to attend to in the afternoon. Nino was out of the house early with meetings as well, and it was suffice to say it started out as a typical busy summer day for a mom who likes to multitask. 

I had to head over to The Viking Kitchen later in the evening for some special guests who were joining us for dinner, I had to try and get my schedule in order for the rest of the week. I also had to find the time to go food shopping and prepare an apple pie.

I whipped up a simple lunch of pan fried Italian sausage and peppers and some roasted garlic new potatoes so that we could all sit down for lunch together before Gelli had to take a nap. I brought out my favorite bread from BCC that is fruity and nutty at the same time in case I wanted to cheat a little and have a small piece with lunch, despite my wheat intolerance.

 

The picture might not have much in it. But I will remember the quiet humming of the fan after the kids stood up from the lunch table and we were finished. I wanted to snap a photo simply, to remember the moment.

The picture might not have much in it. But I will remember the quiet humming of the fan after the kids stood up from the lunch table and we were finished. I wanted to snap a photo simply, to remember the moment.

We were all talking and teasing one another, and I must admit I was enjoying the lighthearted banter that was going back and forth across the table. Gelli was doing pretty well while we were all eating together because even though she was full, she did not throw any food at anyone. (We are working on this. Promise.)

After Gelli got up to play, Miguel turned to me to ask if I knew that the life expectancy of someone with Down Syndrome is different than the life expectancy of a typical person. In other words, he asked me if I knew that someone like Gelli might not live as long as a typical person.

I explained that yes, because of their extra chromosome, that someone with Down Syndrome has a life expectancy that is slightly different, but that Gelli can live well into her 60’s as opposed to how it was before. (Years ago, someone with Down Syndrome might only live to sometime in their 30’s.) 

There was a silence that fell on the table.  It was heavy, and sad, and contemplative.

Gia and Miguel were digesting what I had just shared, and without thinking, I shared another sobering statistic. This was a statistic that kept me in bed…for three days while cuddling my baby when she was less than 6 months old.

Through a website, back then, I had read about the chances of Alzheimer’s and people with Down Syndrome. I shared this statistic with my children, and Gia began to cry. Miguel said he couldn’t finish his food anymore and when Diego came back to the table after playing with Gelli, (when she went up to take her nap) he could feel the shift in energy at the table and he started to ask what was happening…why were we all so sad…and why was Ate crying.

I also took the opportunity that as sobering (or maybe even depressing) these statistics are, that these numbers are teaching us quite an important lesson. (There’s always a lesson.)

I didn’t want my big kids to be sad about the possibility that Gelli might develop Alzheimer’s at a young age. I wanted them to understand that all of our time is limited on this earth.

We don’t know how long ANY of us will be here…but knowing what we know now, simply because Gelli chose us as her family-makes it even more important for all of us to be grateful for every single day we are given. 

I also shared that it is important that they LOVE EACH OTHER, and love their baby sister all the time, at the same time being grateful for her good health, and her presence in our lives.

After the kids stood up from the table, I whispered a little prayer of gratitude for ALL of my kids. For if I know anything…I know that they will take care of each other, and look after one another, long after I’m gone.

 

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Comments

  1. Peter A. Ressa says

    April 30, 2015 at 11:39 pm

    Michelle, Do not believe everything you hear or read…. statistic are often incorrect! Uncle Tony’s brother Arthur lived until his early seventies and did not have Alzheimer’s. And, that was a long time ago….

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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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