Special Gifts

Before Sofia I had practically zero knowledge about Down Syndrome. I have since read up and exchanged messages with families who have a family member with Down Syndrome.

I have learned of accomplished people with Down Syndrome such as Frankie Scarfone, a karate hall of famer; Deanna Sipaco, a visual artist who has exhibited her works here and abroad, even gifting Japan’s Princess Masako with one of her paintings; and Clarissa Tiongson, who produces paintings in collaboration with her mom. Plug: Clarissa’s paintings are for sale. Clarissa’s mom, Malu, gives seminars and has written a book about raising a child with Down Syndrome. Gotta add that to my reading list.

I hope this little post of mine enlightens at least a few other people too.

Sofia update: mostly yellow poop today, just a teeny bit of blood early morning. Go, go, yellow!

Nhatz ran into the priest who baptized Sofia, Fr. Silva. He visited the NICU today and prayed over and blessed her.

 

PWD ID

Good thing Nhatz reads the news. He found out that people with Down Syndrome are now covered by the PWD (Persons with Disabilities) ID Card.

I went to the Cainta DSWD (Department of Social Welfare & Development) office and cried as I filled up the application form. I forced myself to think this was a good thing – it would provide Sofia with discounts to medical services, medicine, basic commodities, etc.

Nhatz texted from the hospital that Sofia was wide awake. I turned on the positive vibes even if she couldn’t see me and texted back, tell her I love her so, so much and that I got a discount card for her!

How to Apply for a PWD ID Card

 

Stretched

Nhatz and I joke that had we been weaker maybe God would have given us a lesser trial.

It reminds me of our company’s “angelic” gym trainer -

Dec 2010: I’ll give you HLHS <stretch> kaya?*
Apr 4, 2011: I’ll give you Down Syndrome <stretch> kaya pa?
Apr 27, 2011: I’ll give you acute kidney failure <stretch> kaya pa?
May 23, 2011: I’ll give you infection <streeetch>

We pray for Sofia’s complete and speedy recovery, but we’ll persevere as you ask, Lord.

*Kaya = bear, pa = still; kaya pa? = can you still bear it?

 

April 4, 2011 – 4/4/11 5:55 pm- Welcome to the world, Sofia Ysabel!!!

April 4 was our preferred date for Sofia’s birth by CS. Why? It was close enough to her due date of April 9, allowed some level of predictability, but also allowed me to attend her brothers’ end of schoolyear programs dated March 26 and March 30.

Sofia agreed. I was in my hospital room waiting for my CS when I experienced contractions

The doctors told us they suspected trisomy 21 or Down Syndrome. This was confirmed by a test a few days later. No matter, we loved her just as fiercely and were just as determined to support her through her heart treatments and extra developmental needs.

So after our crash course on the anatomy of the heart we researched and read about Down Syndrome. We learned that it was just like raising any other child but in slow motion. She may not end up with math as her strength, but as a kid with a brother with DS put it, she would be good at “things that matter” like interpersonal intelligence.