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Advocate Down Syndrome

#29DaysofAwareness February 17th

For today’s post on #29DaysofAwareness, I have invited Irma Ocampo Ignacio to share a little bit about her journey as Nicey’s mother. I had the pleasure of meeting Irma at Miss Possibilities last year. 

Actually, I had met Nicey’s Ate and Kuya, before I met Irma. As part of the pre-production for Miss Possibilities, the organizers had set up a photo and video shoot of the participants with their families. It was another way for all of us to get to know the girls that would be showcasing their talents, and for us a way to get to know their families as well. It was a beautiful experience for me, and reminder how each of these girls are not only beautiful on the outside, but on the inside as well.

While I was talking to Nicey’s Ate, I realized their family was very similar to ours. (Girl, Boy, Boy, Girl-in that order) It was heartwarming for me to get a glimpse of what could be my future with these siblings and Nicey as their youngest princess.

Nicey10

Thank you Irma, for taking the time to share with us, a little piece of your story with Nicey. This is the perfect way to begin the day!

When Nicey was still in my womb, the ultrasound showed that she had a hole in her heart and collapsed lungs. I was advised by my docto to have a neonatologist and a surgeon ready because of her condition. Luckily. When I delivered her, her lungs expanded and she didn’t undergo surgery but had to stay longer in the nursery.

Nicey1

When Nicey was born and the doctor at Makati Med told me that she had Down Syndrome, I felt as if the world tumbled upon me. I cried the whole night while my husband Rey, comforted me and told me to accept her as she is. He said she is a manifestation of God’s love to us and so we must accept her so that other people will accept her too. Initially, I didn’t want to visit her at the nursery to breastfeed her coz I was so scared to see my child with Down Syndrome. My eldest daughter (who was only 13 yrs old) kept on prodding me to go and see her sister. She said she was so cute! I asked her if she understood the condition of her sister, that she had Down Syndrome, and she immediately replied, ” Yes Ma, I know what it is, but it’s ok with me.”

Nicey2

It would doubly hurt me kung mawawala sya sa atin.” At this time, she was already aware of the hole in Nicey’s heart. This statement gave me a change of heart. I told myself, “Here is a young girl, accepting her sister for what she is, seeing the beauty of her sister, beyond appearance and because of that, I should accept Nicey, as a mother.

Nicey9

So, together with my Maica, and her dad, Rey, we went to see her at the Nursery. When I saw her and carried her in her arms, my tears welled up. I saw this innocent and beautiful gift from God. When I took her to my breast to nurse, I felt the bond and love that only a mother can give to a child!

Nicey12

After that, I asked forgiveness for my past actuations to her and to my Creator.

 

When we were discharged from the hospital, we saw a Nissan Patrol ahead of us with a sticker “Down Syndrome Association of the Philippines with a contact number. As soon as we got home I called up the number, and the secretary told me to wait for a return call. Lo and behold, In just a few minutes, the president of the association, Tony Pasia, called me up and assured me and my family of how it is to have a child with Down Syndrome. He asked me how I was faring and my husband’s reaction and feelings that time. I told him that we were still on a roller coaster of emotions, but my husband had already accepted with his whole heart, what this event in our life meant for our family. I told him that my husband had already said, “Nicey is a gift of God and a manifestation of His great love for us.”

Nicey4

Hearing his words, Tony asked me if we are members of a community, and I told him we are members of Couples for Christ. Then he said, that God is really amazing, because at that time, he was looking for a speaker on God’s LOVE in the Life in the Spirit Seminar and here we were talking about God’s love. After our conversation Tony invited Rey to share a talk on God’s Love.

Nicey14

This was the start of Nicey’s touching the lives of other people through our family’s experience of acceptance and love.

I rode a roller coaster of emotions when she was still a baby. I was scared of how I will bring her up, considering the high cost of therapies and other medical attention that she would need.

Nicey7

Sometimes, in my quiet time with the Lord, I asked Him, “Why did you give me a child with a special child, we are only ordinary employees and we have 3 more kids to rear? I didn’t ask for another child because we are already happy with 3 kids but why did He give us another one, and with Down Syndrome at that. It is still vivid in my mind, how He answered me. He said, ” Irma, why do you question me? Nicey is my child, I am her real Father, I made her that way, beautiful and without blemish. You are only her caretaker here on earth. Just love her and I will take care of her. I can never give her to any other family except yours, because I know that your family has a huge heart, full of love to give and share with her.” From then on, I relied on his His promise and took comfort in His loving words.

Nicey13

My family started doing what we we ought to do. We attended the Early Intervention Program of DSAPI (Down Syndrome Association of the Philippines) where we learned what the next steps would be and this lead us to people who will help us make Nicey be the best that she could be. We went to her geneticist, Dra Carmencita Padilla, her Developmental Pedia, Dra Alexis Reyes, and her first Physical Therapist, Geevee Rivadelo. As early as 1 month old, Nicey started physical therapy, soon after that, occupational therapy, speech therapy and later on her special education. These activities were always a family affair. On weekends, her siblings would go with her to her therapy sessions too.

She and her siblings still share beautiful moments together. She is always a part of their activities and the plans they make in their lives. She is a funny, witty, loving young lady. She is now 16 years old, goes to Community of Learners (mainstreamed class) in Grade 6, attends Kumon, is a member of the choir in our chapel and she sings in the mass every Sunday. She loves to sing and dance and is a girl so generous with praises for others and prays for everyone!

She also won in the recent competition for girls with different disabilities, Miss Possibilities! Her wit and her charm won the hearts of beauty queens like Venus Raj, Nina Ricci Alagao, socialite Tessa Prieto, and Rhodora Fresnedi.

Nicey6

Who would think that she would be the Beauty Queen in the family!

Life is still a struggle.

She has a lot of medical issues that we have to address. Last 2014, she had her 6 hr ear surgery, mastoidectomy, in 2015, she had her eye surgery, and  later this year she is scheduled for tonsillectomy. She still has a hole in her heart which has to be operated on, but Nicey is a fighter!

Nicey8

Even during her hospitalizations, she charms people around her with her bravery and sense of humor. Everything becomes easier, because of her attitude. God is true and faithful to His words, He never left us, nor abandoned us. He provided for all her needs, she is our daughter, and we are only caretakers here on earth.

We will continue to follow His will, to take care of this angel. He is her real daughter, but we as her caretakers here on earth ,enjoy and savor the joys of having her in our life.

Truly, Nicey ignacio is a blessing in disguise! Thank you Father God for entrusting her to us. We are truly richly blessed and honored!

You know I cant stop talking when it comes to Nicey.

Nicey5

Her brother Raymond, who is now in Texas, took up nursing bec of her. He said he wanted to be a nurse to be able to help Nicey, so much so, that when he finished nursing and passed the Board exams, he thanked Nicey because he he took up nursing to do a noble thing for his sister. When he graduated and passed the boards, he realized that it was Nicey who did a noble thing for him. She inspired him to succeed and reach his dreams!

Nicey has a lot of dreams, too. When she was younger she wanted to be a doctor, or even sometimes a police officer. Now she wants to be a lawyer.

We dream with her to be able to reach her dreams the best way she can. As they saying goes, it’s free to dream. She is now in Grade VI and all we hope and want for her is to be healthy, happy and be able to reach her wishes and dreams in the best way she can.

Nicey15

God gave her to us and we can never thank Him enough for choosing us to be a family of this special angel.

I am proud to say that I am a mother of a special angel!

Nicey11

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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!!!
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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!

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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 

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Gah. How is this kid 20 years old already?
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I’ll be sharing a little bit about my faith toda I’ll be sharing a little bit about my faith today with some university students. 

I have shared my testimony with other mommas, women in our community, and parents through this platform and others. It’s always come naturally and has often ended in tears of gratitude and joy for His faithfulness and unending LOVE. 

Of course, sharing parts of myself with others who may find it helpful is a privilege. But for some reason, I am always just a little bit anxious and apprehensive right before I am about to present parts of my story.

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Do you share parts of your faith here?
What does that look like?

#ThoughtfulThursday #faith #thoughtful 
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Brunch feels with beautiful ingredients. Tous Les Brunch feels with beautiful ingredients.

Tous Les Jours Toasted Ciabatta with toppings for everyone.

Exhibit A: Miso Peanut Butter Chickpea Salad with grated hard boiled eggs and fried onion strips
Exhibit B: Herbed Cream Cheese with Avocados and Everything But The Bagel seasoning
Exhibit C: Whipped Peanut Butter with Raspberry Merlot Peppercorn Jam and fresh berries

Thankfully, I was able to have a bite of each one. I cannot choose. Which one would you call dibs on?

A  B  or C?
If you love #Brunch and seafood the way I do, then If you love #Brunch and seafood the way I do, then this Seafood Tower @jonesalldayph will tempt your tummy and make your tastebuds sing. 🎶

You’re welcome! 🤗
Such a fun evening with @elle.frazzetta and @arlug Such a fun evening with @elle.frazzetta and @arlugomez. 

Catch up convo while introducing two dear friends was so@etching to break up my time in the city. It was made even more fun because I got to catch a bit of the Summer Concert Series at #HudsonYards.

Definitely not enough time with these two!!!
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